Thursday, May 31, 2012

Oh, Boy! It's Gonna Be One Of Those Days!

TWO hearings today, plus a short visit from a friend and then a conference call with a potential funder.  I have no clue how I am supposed to manage all this.  So I think I'll start with something I can manage -- the news.

MUST READDr. Pauline Chen talks about the problems patients have talking to their doctors, asking questions, mulling the research, seeking guidance. This must change, especially for people with chronic illnesses.  We are forced to manage our own care to a large extent, at least in between doctor visits.  So we need to understand.  And that means we have to be able to ask questions.  If your doctor gives you a hard time, bring a copy of this essay with you.  It's so right, so important.  If you read nothing else today, please read this!

The Social Security disability trust fund will be broke in 4 years.   This is astonishing and terrifying, at once.  And Congress does not appear to be interested in figuring out a solution, either.  Once the payroll tax doesn't cover the cost, the remaining reserves will pay only 79% of benefits -- a decrease of 21% for people already teetering on the brink of poverty.  Here's something to talk to your member of Congress about.

We're doing so many appeal hearings this week, most of which relate to mental health care.  So this article is timely.  Psychiatric patients who go to an ER for help languish there, sometimes for days, because there are so few inpatient psych beds left.  It cannot be healthy for a patient to sit in an ER exam room for a day or two waiting for a bed.  Nor is it good for patients to be turned away because they have nowhere to go.  On the other end, we see insurers doing all they can to limit mental health services -- terminating coverage of residential care only two weeks after a suicide attempt; refusing any residential care to a young girl who is violent and cannot be controlled; cutting off residential care for a patient in the last phase of her treatment plan, sparking an immediate and very serious relapse.  We have to figure out what we're going to do about mental health care in America.  It's not enough to pass laws requiring mental health parity if those laws are not going to be enforced.  This is a very serious problem that weighs heavily on me.

Medi-Cal -- Medicaid in California -- works for most enrollees.  However, there are problems finding doctors enrolled in the program, and recipients use the ER more often than patients with commercial insurance.  In Oregon, a new experiment with Medicaid sounds really exciting.  Each region of the state will get a coordinated care organization, umbrellas containing all of the core providers -- hospitals, doctors, mental health providers, dentists -- and patients can go wherever they want within that umbrella.  There also will be case managers to help coordinate care and counsel patients on their options.  The coordinated care organization will be paid a lump sum to care for each patient.  The hope is that this will save money and improve patient care.  There's always the concern with these kinds of managed care arrangements that there will be an incentive for the provider to provide less care -- you get paid $20/month to care for me, whether you see me once or you see me 5 times, meaning you make more money if you see me as little as possible.  Hopefully, though, Oregon will build protections into the program to avoid creating those incentives.

Finally!  An excuse not to exercise!  A new study says exercise may be bad for your heart.  Don't get too excited -- the problems were seen in only 10 percent of patients.  In general, exercise is a good thing.  Indeed, the researchers caution that nobody should see this as an excuse not to exercise.  Of course, that was my first reaction!

And there you go, the morning's news.  Have a great day.  Wish me luck!  Jennifer

Wednesday, May 30, 2012

Hump Day Already?

Big appeal hearing this afternoon -- a young girl with reactive attachment disorder with multiple psychotic breaks and her insurance company doesn't think she needed inpatient treatment, even after she was arrested and after more conservative treatment failed.  Unreal, the world I live in.  Let's see if the news gives us any larger perspective.

I have to put this first even though it's only a small trend right now.  A new program called Hospital at Home for patients with complex chronic illnesses who prefer to remain home when they need more intensive treatment.   What a great prospect for patients, being able to receive the treatment they need without hospitalization.  Of course, the hurdle is Medicare and insurance companies.  I have to think, though, that when such a program is set up right, it may actually save money.  In any event, innovation in care delivery is essential if we are going to figure out how to reform health care in America -- so I think we should be trying anything that makes sense to see how it works.  And insurers and Medicare should support such innovation.

Conservatives are campaigning against health insurance exchanges.   Now, let's look at this.  The exchanges are where people will be able to go to comparison shop for health insurance.  For each plan, there will be a summary of benefits and coverage in an identical format, allowing  side-by-side comparisons.  Every plan will have to contain "essential health benefits," and this is estimated to require the beefing up of about 50% of individual plans.  Who's against these common sense, consumer oriented reforms?  The Cato Institute and ALEC.  You know ALEC -- the conservative group that's been losing supporters (retailers like Amazon, for example) as they've been exposed as a tool of the GOP?  Exchanges in and of themselves are not controversial.  How is it not better for consumers to be able to make more informed choices when they buy insurance?  But the exchanges are one of the keys to implementation of health reform.  The opposition is not to exchanges -- Utah has had an exchange for years, and it's hardly a liberal bastion.  The opposition is to health reform and anything that furthers it.  I believe the American people want the sensible parts of health reform, even if they feel some of the other elements -- the individual mandate -- are controversial (and I've explained this one to death -- we need the individual mandate if we're going to cover pre-existing conditions).  The exchanges are a no-brainer, and unqualified good thing.  Indeed, I've heard no argument against them other than the fact that they are key to implementing health reform.  That's no argument for why we shouldn't have exchanges even if health reform is struck down.

The challenge of building exchanges, though, is Information Technology or IT.  Exchanges would have to interface with other systems -- from Medicaid to the IRS (assuming the subsidies survive the Supreme Court decision).  And this is a huge challenge. 

The House GOP plans a series of votes to repeal pieces of health reform this summer, leading up to the election. A tax on medical devices that is opposed by -- you guessed it -- the medical device manufacturers.  Loosening up rules for health savings accounts and flexible spending accounts.  The GOP demanded that health reform pay for itself, and now they want to undo the ways that was accomplished.  Of course, the big deal comes at the end of this month, when the Supreme Court rules and we see what kind of shape we're in.  I'm still hoping.

Massachusetts voters may be deciding whether to add a "death with dignity" law.  This law -- like similar ones in Oregon and Washington -- will allow doctors to prescribe medication that will allow terminal patients to end their lives.  I so totally believe that it is right to give us control of when and how we die, especially if we are suffering and relatively sane, before we become too incapacitated to make the decision ourselves.  Like abortion, it's because the decision is so hard and so complicated that I believe it should be up to each of us, in consultation with our consciences.  What do you think?

More on the dangers of hormone replacement therapy, especially for women who are past menopause and healthy.  This panel found little evidence that HRT can fend off dementia or heart disease, and it carries with it many dangers -- blood clots, urinary incontinence.  I still don't know the right answer on this one.

Want to screen yourself for mental illness?  There's an app for that.

And that's it for this morning.  Have a great day! Jennifer

Tuesday, May 29, 2012

So Much for Long Week-ends

Memorial Day week-end passed, and I ended up working most of yesterday, but at least I worked at home with Emily on my lap purring.  Today, our summer interns start and I have a school conference.  Tomorrow I have a big insurance appeal hearing.  Thursday, I have two big hearings.  Friday I have a very important (secret) meeting.  So it's going to be a busy week here at Advocacy for Patients.  But first, the news:

What happens to Exchanges -- health insurance marketplaces -- if the Supreme Court strikes down even part of the health reform law?  Some states say they will enact their own individual mandates.  Other states haven't even started setting up Exchanges.  Really, we don't know.  But what we do know is that, if people with pre-existing conditions are going to be covered -- as they must -- then there has to be an individual mandate to help keep premiums level.  If it can't be done at the federal level, expect to see a big push from people like me urging that it be done at the state level, as in Massachusetts.

Congress is beginning to wind down extended unemployment benefits.  Who thought this was a good idea?  What are the unemployed supposed to do?

A staggering 45% of Iraq and Afghanistan vets are seeking compensation for disabilities.  The cost of these wars has not even begun to be felt.  We are better at saving lives on the battlefield, but that means more injuries and trauma, and that means more disability benefits.  Our vets deserve it, but how will be afford it?

The LA Times runs a front-page story on specialty tiers.  I'm telling you, folks. If you are not paying attention to this, you're in for a rude awakening.  One month, your med costs $40.  The next month, it costs $900.  It's incredibly short-sighted of insurers to bump up prices so high that they're unaffordable.  People stop taking their meds and then they get sicker, ending up in the hospital or needing surgery, costing their insurer far more than the cost of these drugs.  What is someone with MS, Crohn's, rheumatoid arthritis to do?  All I can tell you is that this is an issue that you have to pay attention to, talk to your state legislators, urge them to action.

Checklists help increase surgical safety.  A trend started a few years ago by Dr. Atul Gawande is catching on, and it really does help ensure the safety of surgical procedures.  Has your surgeon used a checklist? 

Exercise is good for chronic illness. People with cancer, diabetes, heart disease mistakenly believe exercise is bad for them.  But it's not.  Start slow.  Work up gradually.  And do as I say, not as I do.  Indeed, a push to exercise is occurring among health care workers, as well.  Would you do it if it saved you money?

Colonoscopies are more expensive than they ought to be, some say -- and it's at least partly due to the use of anesthesia.  When the anesthesiologist is out-of-network, look for a big fat bill when you're done.  This is a MAJOR problem.  If you are having a colonoscopy and your doctor uses anesthesia (not the twilight sleep that a nurse administers, but propofol, which requires an anesthesiologist), you must ask in advance if the anesthesiologist is in your insurance network.  If not, you must decline the anesthesia or ask for an in-network anesthesiologist or you will be responsible for the anesthesia bill.  Meanwhile, virtual colonoscopy with virtual cleanse appears to be effective, at least for finding large polyps

Want lower prices?  If you pay cash and don't use your insurance, you may get the cheapest price of all.  Interesting.

MiraLax is a popular therapy for constipation.  It's FDA approved for adults, but not for children, although thousands of pediatricians prescribe it for kids.  This isn't unusual -- most drugs for inflammatory bowel disease, for example, are not FDA approved for kids, but they're used widely.  I suspect this is true of drugs for other diseases, too.  We have to figure out how we're going to treat kids if we have to have FDA approval first.

It's hot all of a sudden.  But it feels hotter than it is because our bodies are not acclimatized to the heat.  Learn all about it here.  The upshot is that it won't bother you as much in a couple of weeks.

And that's it for today.  Keep cool and have a great day!  Jennifer

Friday, May 25, 2012

You Outta Be In Pictures! ACTION ITEM!

Hello.  CBS News is looking for people in the Washington, DC area who would be affected if the Supreme Court strikes down the health reform law.  So if you cannot get insurance because of a pre-existing condition, or you can't afford insurance because the premiums are high due to a pre-existing condition, or you are in the Pre-existing Condition Insurance Plan, or you have insurance but it's really too expensive or not the coverage you want, but you can't switch because of a pre-existing condition, please contact me ASAP.  Email is or phone is (860) 674-1370.  They would like people who are willing to be interviewed on camera.

Remember, folks, this is how we raise awareness, by telling our stories.  So this is a chance for you to make an important contribution on behalf of all of us with pre-existing conditions.  Now is not the time to be shy.  Be bold; put a face on the problem.  You'll be speaking not only for yourself, but for the millions of other Americans in your shoes.  Thanks.  Jennifer

Finally Friday

Almost time for this old girl to hunker down and get some rest.  TG for three day week-ends!  But first, the news:

Battle lines are being drawn on the Bush tax cuts, which expire at the end of the year.  The GOP wants to extend them all; the Dems want to extend them only for people earning up to $1 million.  Either way, it will affect the deficit, which, in turn, affects health care spending.  So keep an eye on this one, folks.  It's going to be a big battle through the election.

A major initiative to move the elderly and disabled into the community and out of nursing homes has proven more difficult than anticipated.   The program is called Money Follows the Person.  The idea was to take the money Medicaid was paying for nursing homes and use it for housing and community supports.  Some states are doing well; others are moving slowly, having trouble assembling a statewide network of community supports.  We need to stay at it, though, because this program makes so much sense.  Nobody wants to be in a nursing home if they don't have to. 

Here's an exciting thought.  We all know that Congress is not going to approve universal healthcare, single payer, Medicare for All -- whatever you want to call it.  But one member of Congress -- Rep. Jim McDermott -- is proposing legislation that would allow states to request federal funds to start their own health care program. While the odds of passage are not great -- when was the last time Congress did something big? -- it's yet another way in which we may be able to reach the goal of universal coverage.  We need creative thinking, so we see this as a positive step.

The Senate passed the FDA reauthorization bill yesterdayThe House Committee already passed its version, which has broad bipartisan support.  So it appears that this may actually get done.  Surely, we need to do whatever we can to get new drugs to market without needless administrative delay. 

One of my favorites, Dr. Pauline Chen, writes about a play called Love Alone that's about the consequences of a grievous medical error.  The play, being staged in Providence, RI, is about the effects of medical error not only on the patient's family, but on that of the doctor, as well.  Sounds really wonderful.  Do you believe doctors stress like this over their mistakes?  Some do, some don't, is my guess.

And we have another installment from the blogger who's sharing her journey through a bone marrow transplant.  Today, she's talking about music.  And cancer.  Quite moving.

Is the iPhone the biggest thing for the blind since Braille?  That's the claim.  Apparently, there's a feature you can turn on that will tell you which app you're on and help you navigate it by touch. Check out the article for instructions. 

And there you go, another day's news.  Have a great day and a great week-end!  Jennifer

Thursday, May 24, 2012

It's Only Thursday?

I admit, I'm beat.  In a former life, I could party until 3 am and sleep until noon the next day and move on.  Not so much any more.  I can still party until 3, but I'm up at 7 no matter what I do.  In the four nights I was in LA, I slept a total of fewer than 16 hours and it's definitely catching up with me.  Oh, well.  If I just make it through today and tomorrow, I'll have a 3 day week-end and a chance to catch up.  But first, the news:

If the health reform law survives the Supreme Court, about 33 million uninsured Americans will be able to get insurance.  However, that leaves 25 million or so who will remain uninsured -- and one in four of them are illegal immigrants.   There's great controversy over whether to care for undocumented immigrants; some say they should not be encouraged to be here, while others say they are people deserving of basic health care.  Primary care providers say they will create a strain on the system as millions of new insureds enter the system seeking care.  Tough one.

And even with insurance, out of pocket costs are more than many can bear.  With the advent of high deductible plans and specialty tiers, the cost of basic medical care -- not even the fancy stuff -- is getting to be beyond the reach of many middle class Americans.  As a person with a chronic illness, I live in fear of not being able to get one of the medications I need.  I don't have answers for most people, either.  Under-insurance is a massive problem that we are going to have to find a way to address.

Hospitals and insurers are trying to make changes that will reduce health care costs.  One of the main aspects of this is the use of patient centered medical homes, where a primary care provider coordinates all of the specialists, ensures that there's no duplication of tests or conflicts in medications.  Accountable care organizations offer similar benefits.  Although this movement was sparked by health reform, experts say it will continue even if the Supreme Court strikes down the law.  Whether it will succeed in driving down health costs remains to be seen, but what does seem clear is that patients with complex medical conditions are reaping the benefit.

As the states and the federal government work on setting up exchanges, beginning with determining the essential benefits package -- the bottom line that tells all insurers what they have to cover -- we're finding that, although most group plans already meet that threshold, individual plans do not.  If the law stands after the Supreme Court rules, you will see people getting much better coverage, and out of pocket costs will be capped at affordable amounts. 

So many times each day I say "if the Supreme Court doesn't strike down the law."  We should know in about a month.  I'm glued to the edge of my seat until then.

Have a great day.  Jennifer

Wednesday, May 23, 2012

Wish I Were in Seattle

I had the best trip to LA, but I must admit that not being there for the Flight to Mars "home" show tonight at the Showbox in Seattle is a bit of a bummer.  If you haven't caught one of the shows and you're in the Pacific Northwest, don't miss it.  Flight to Mars, Lazy Susan, the Friel brothers (not sure which of their bands they're playing with), maybe even a little Star Anna?  It's going to be a great night of great music and great people for a great cause.

But I'm not there, so I guess I'd better get to work.  Here's the news:

What's it like to be sick in America?  Here's a new poll that may not tell you anything new, but it may help to vindicate you a bit.  Those who are sick are really worried about costs.  Many of these are folks with insurance, but they're worried about out-of-pocket expenses.  I think people who aren't sick don't realize the extent of the financial burden those of us who are sick have to deal with.  Here's a link to the poll itself.  I really don't think people understand how much it costs us to be sick.  But even more, look at the extent to which patients have had negative experiences with the health care system. A great and important piece of work.

We're all worrying about what the Supreme Court will do.  Senator Sheldon Whitehouse says that, no matter what, the delivery system reforms are here to stay.  I suspect that's true -- and that even more of the law will survive.  The question for me is coverage of people with pre-existing conditions.  But there's been a lot of good already, so we'll have to wait and see what sticks.

So many of us have said the words "Katie Beckett waiver," a way to get Medicaid to cover profound health needs at home.  Sadly, Katie died.  But she lived a whole lot longer than anybody thought she would, and as a result, thousands of sick kids have lived, as well.  Thanks, Katie.

Ever think about alternative medicine?  I get emails from strangers telling me they know how to cure me.  I'm pretty sure most of them are bunk, but you never know.  Here are some things being recommended by doctors.  I got excited about the em wave2 until I looked at the price. 

In Connecticut, delays in processing applications for a program to provide home care to seniors are causing scary delays in providing care.  This follows tales of delays in processing applications for Medicaid, food stamps -- and this is what happens when budgets are cut on the backs of the poor and the elderly.  Shameful.

And on that note, off I go with a long to-do list and not enough time.  Have a great day!  Jennifer

Tuesday, May 22, 2012

Welcome Back!

Good morning!  Hope you all had a great few days while I was out in California.  I must say that the most fun about my job is that a bunch of our fundraising comes along with great music and great friends.  Flight to Mars was fabulous, as always.  For me, the real treat was an acoustic set Mike played at a CCFA fundraiser on Saturday night with Jack Irons and Jakob Dylan -- I will never forget that! 

Alas, though, I had to come home.  Emily was happy to see me, and I slept pretty well around the clock yesterday, so I guess I have no excuse now and it's back to the grind.

There are a few news items worth mentioning this morning -- I couldn't figure out how to post links on my iPad, so I may be a couple of days late on some of these, but these stories are timeless.

A new kind of primary care medicine -- no insurance, but primary care direct.  This is an off-shoot of concierge practices, in which doctors provide special care, including house calls, to the wealthy.  Under primary care direct, you pay a flat rate for unlimited primary care visits.  This is not insurance, and it only covers primary care.  But for relatively healthy people, it's an interesting new model.

43 Catholic groups have sued the Obama Administration for requiring that their employees have access to contraceptives, even if they don't have to pay for it. 

A government panel recommends against PSA blood tests for prostate cancer.   They say it does more harm than good, causing us to treat problems before they need treatment. 

A tale of aggressive debt collection in and by a hospital.  So wrong.

The courageous woman who is blogging about her experience undergoing a bone marrow transplant for leukemia is finally out of the hospital -- but her ordeal is not over.  She's now at a halfway house called Hope Lodge -- and she is filled with hope, as I am filled with admiration for her.

Dr. Pauline Chen's latest essay is about teaching people about organ donation as they wait in line at the DMV.  Are you an organ donor? 

A serious malady -- fixed with yogurt and corn starch?  Yup.  In this case, the diagnosis was the key -- a rare form of glycogen storage disorder. 

A treasure trove of data may help us understand health care utilization better.  Perhaps this will help us adjust spending.

That'll do it for today -- a mini-blog.  I have a lot to get done.  So have a great day.  Jennifer

Saturday, May 19, 2012

World IBD Day!

Today is world IBD day. IBD -- inflammatory bowel diseases like Crohn's and ulcerative colitis -- affects about 1.4 million Americans. When I was first diagnosed, they had only first started using colonoscopy and upper endoscopy as diagnostic tools. When I had an upper GI and barium enema and they found nothing, they said it was all in my head and sent me to a shrink until I was bleeding internally and they couldn't ignore the fact that I was sick. Twelve years of prednisone followed, during which I was a completely different -- in a very bad way -- person. Today, with a new diagnosis and decent insurance, you can take a 5-ASA, Remicade and 6MP, and achieve and maintain remissions for long periods of time. We know so much more today. Now, we have to find a way to get this newer standard of individualized care out there to everyone, insurance or not, money or not. No more people in small towns who are on narcotics alone and, thus, become disabled. No more people who can't get a good diagnosis because they can't afford a colonoscopy. The advances we've made have been patient driven. CCFA was started by patients and their families. Now, there are so many other patient-driven organizations all working together to fund and find the cure -- and to make sure we have decent quality of life until there's a cure. Advocacy for Patients is part of that constellation of patient-driven organizations. I'm so proud to be part of this movement -- and so privileged to do this work. Think you're too sick to make a difference? If all 1.4 million of us told our story to one person who never met someone with IBD today, we will put a face on the disease for 1.4 new people -- and show ourselves and others that these diseases are not something we need to hide. Tell your story. Feel the power. Today I honor Mike McCready and Ashley O'Connor for all they have done to make it okay to talk about IBD, who support the camps for kids, who support Advocacy for Patients. They -- like Michael Modell and Suzanne Rosenthal before them -- are showing us how to live with IBD with grace, dignity, and hope. Jennifer

Wednesday, May 16, 2012

Off on a Flight to Mars!

The day has finally arrived.  I leave here shortly before noon, headed to the airport and the trip across the country to see my friends, Mike McCready (Pearl Jam) and his wife Ashley O'Connor.  It's going to be a long, physically difficult trip, but I wouldn't miss seeing Mike and Ashley for anything.  Tomorrow night's Flight to Mars show at the Troubador should be something to remember.  I think of the Troubador as the West Coast's version of CBGB's or something, so getting to go backstage there should be a blast, thinking of all the careers that started there.  And Mike's playing a special, private acoustic show on Saturday night that I think will be great fun, too!  All I need is the energy to get through it!

But first, I have a few hours of work left to do, starting with the news.

The ultimate betrayal.  For more than two years, the GOP have been saying that they would repeal health reform and replace it with a different package of reforms.  However, they have backtracked.  "Repeal and replace" has now become "repeal -- period."  So no relief for people with pre-existing conditions.  No checks on the massive premium increases we've seen over the past 10 years.  No closing the doughnut hole for seniors.  No free preventive care.  No coverage of kids to age 26.  No exchanges to allow people to shop for health insurance.  Just get rid of it all and retreat to the status quo ante, the status of things before March 23, 2010, the day health reform was signed.  Understand this, folks.  It's what you like to call "Obamacare" or it's back to the way things were, which was unsustainable, with 50 million uninsured and growing, and many more underinsured.  I hope the American people are going to realize that imperfect health reform is better than doing absolutely nothing.  Oh -- and by the way, the insurance industry stands to lose as much as $1 trillion if health reform is struck down.  So who gains from repeal?  Just some noisy politicians.

Fourteen states are setting up searchable databases of health care costs so consumers can shop for the best prices.  Health care is the one thing we buy without knowing the price, without comparing our options.  Should our decisions be motivated only by price?  Absolutely not -- our decisions should be motivated by quality of care, as well.  But consumers should be deciding how to balance price and quality, not leaving it all to chance.  And it may be that, when prices are public and transparent, outliers who charge a lot more will be forced to bring their prices down.  So I think this is a great trend.

Are you ready for another battle over raising the debt ceiling, right before the elections?   Sure, Speaker Boehner.  Bring us to the brink of fiscal disaster yet again.  Watch our credit rating fall again.  And do it all in the name of preserving the Bush tax cuts for the wealthy -- part of what pushed us into this recession.  I think the voters will really love you for this.  Not.  And yet, the Senate GOP is all in for this battle, too.  I don't get it.  Don't they realize the majority of Americans hate this partisan bickering and just want them to get down to business?

An FDA advisory panel has approved a rapid, take-home HIV test.  Hopefully, this means more people will be tested and diagnosed and treated as early as possible.  Great news.  Next, the whole FDA has to act on this recommendation, but hopefully, this will be on the market early next year.  Another milestone in the fight against this awful epidemic.

A new drug will be tested on people with a high risk of getting Alzheimer's disease.  Can we prevent it in our lifetime?  Hurry up!

And that's the news for today.  Hope you have a great day and a great rest of the week!  Jennifer

Tuesday, May 15, 2012

Tuesday -- Almost Outta Here!

Today's my last full day before I head out to Los Angeles for my favorite trip of the year, Mike McCready's Flight to Mars benefits for CCFA and Advocacy for Patients.  In the past, Mike has played one show in Seattle.  However, because this is the 10th year of the Flight to Mars shows, Mike and his wife Ashley have organized a mini-tour, seven shows on the West Coast.  I'll be there for the LA bash, and then spend a couple of days with Mike and Ashley before heading home.  It's going to be hard -- when I planned this trip, I had a staff attorney who would be covering the office for me.  Now that she left without notice, and my new wonderful staff attorney doesn't start until I get back, I'll be returning calls from the road, which can be a challenge, especially with the time difference.  But I'll do my best -- and hope, perhaps, things will quiet down a bit. 

The phones have been terribly busy lately, and most of the calls are substantive cases that require my intervention.  The quick questions seem to have grown into bigger deals.  I think this month will be our busiest ever for school cases. I don't know what's going on -- why schools seem determined to fight, even over accommodations that don't cost money.  I have a load of cases involving absenteeism due to illness, and threats to withhold graduation as a result.  A really big deal for these kids -- and an outrage when the students have passed all of their classes and done everything asked of them other than showing up to school sick.  I really don't get it. 

Oh, well.  I guess I might as well turn to the news for some more things I don't get!

Even as the United States is split about efforts to extend health care to all, there is a global push towards universal care that is leaving us behind.  China is doing it.  Mexico too.  If we abandon health reform -- if the Supreme Court strikes it down or if the GOP succeeds in repealing it -- we will be an outlier, one of the few countries remaining that does not ensure that its citizens have access to health care.  That health care costs way more here, too.  Health care will become (if it isn't already) the issue that separates the haves from the have nots.  We must keep fighting to stop this sort of class warfare that really means life and death -- and that sacrifices the lives of people with chronic illnesses just because we were unlucky enough to get sick.

Insurance company denials of coverage are not all about money.  Here's an example.  Traditionally, chemotherapy was given intravenously (IV).  So not only did the insurer have to pay for the drug, but it had to pay for the infusion, which included a facility fee for the hospital.  Big bucks.  But the newest cancer drugs are in pill form.  You'd think insurers would be happy not to have to pay for an infusion and all that that entails.  However, they're making it much harder on people to take these new drugs, placing them on specialty tiers, so instead of paying a flat dollar amount co-pay, you're paying a percentage of the cost of the drug -- far more expensive for the consumer, even though the treatment overall may be less expensive for the insurer.   And while out of pocket costs for medical care are often capped annually, there's usually no cap on out of pocket costs for pharmacy charges.  Some states are passing laws saying all oncology drugs have to be treated the same, but when Washington state passed such a law, Premera Blue Cross said fine, they'll treat all chemotherapy drugs the most expensive way possible, and all of a sudden, people taking chemo drugs (immunosuppressants) for Crohn's disease and other chronic illnesses were being charged $800 per month at the pharmacy instead of $30 per month.  I don't think we have a fix for this yet.  Part of the massive issue of specialty tiers and whether there is an equitable way to ensure patient access without breaking the bank.  And by the way, the cost to insurers of covering all oncology meds the same, with a flat copay, is negligible.  So really, it's not about cost.

We're going to need a lot of new primary care providers as the uninsured get insurance that allows them to see a provider.  But must it be a doctor?  Nurse practitioners see this as an opportunity to educate the public about what they have to offer.  I've seen several nurse practitioners and physician's assistants over the years when my doctor is booked up and I have an emergency.  In my experience, they've been great.  I would never hesitate to see one -- except when things with my Crohn's get complicated, at which point, I don't rely on my primary care physician, either.  But for routine care, check out a NP or PA next time.  I bet you like it.

A new prep for a virtual colonoscopy, sort of a virtual prep.  It's really for people who won't get screened for colon cancer if they have to do the regular prep.  I can tell you that I'm never doing the regular prep again -- especially if there's an alternative!  How cool is this?!!!

This is a fascinating piece -- an interview with a mathematician who is working to understand and, ultimately, end obesity.  A completely different perspective often shows us things we didn't already know.  I think this approach is really exciting. 

Here's a fun fact for you -- up to 30% of kids sleepwalk!  I had no clue it was so widespread.  It's far less in adults -- 3.6%.  But how wild is that?  30% of kids?!!!  Do your kids sleepwalk? 

Finally, here's a wonderful piece by a house mother at a Ronald McDonald's House, where she cares for up to 51 sick kids undergoing treatment, and loves them all as if they were her own.  If only all of us were so generous with our love. 

And on that lovely note, here's wishing you a great day!  Jennifer

Monday, May 14, 2012

Monday Morning New Mommy Edition

I'm dedicating today's blog post to our former administrative assistant, Echo Kendall, who became a mom yesterday, on Mother's Day.  Little Urijah Tristan Johnson looks happy and healthy, as best I can tell from the photos.  It was hard not to tear up when I saw a picture of Echo holding him -- and Echo's sister Celeste, and Echo's mom Cindy, one of my dearest friends.  So congratulations to Echo and Berthel, and all the grandmas and aunts and cousins on the newest addition to a wonderful family.

Let's see what else is going on this Monday morning.

Interesting article in the NY Times about how slippery slope logic often leads us down a wrong path -- and worries that it will play a big part in the Supreme Court's health reform decision.  Really, can you imagine Congress passing a law requiring that we all buy broccoli?  C'mon, really?

GOP State officials are stalling on setting up health insurance exchanges or marketplaces where you will be able to compare and buy health insurance. The thing is that, whatever you believe about health reform, this is a really good idea.  Indeed, it was implemented years ago by the GOP state of Utah.  I get so many calls from people looking for insurance. I can tell them what to look for in a plan, but I can't tell them what's available in their state, or what it will cost.  Exchanges will change all that, giving consumers the power of choice for the first time when it comes to health insurance.  This is likely not part of the law that the Supreme Court will strike down.  It does not depend in any way on the individual mandate.  And if the states don't do it, the feds will step in and do it for them, so several states have plans to move quickly if this part of the law survives the Supreme Court.  I can tell you that, based on what we're going through in Connecticut, the decisions that have to be made to decide HOW to set up an exchange are hard ones.  States that think they can start in July and finish by the federal September deadline are bound to make mistakes, at best. 

The Rebates are coming, the Rebates are coming!!!  If your insurer is required to rebate part of your insurance premium because the medical loss ratio (percentage of premium dollar spent on health care) is too low, they will have to tell you it's due to the health reform law.  

The health care sector is growing jobs like mad, already lifting Pittsburgh out of recession.  Short-term, surely this is good.  But what if the health reform law is struck down?  What if government gets serious about cutting healthcare spending?  Will research funding dry up?  Should we build an economy based on a sector involving so many unknowns?

A bunch of websites ranks hospitals for quality.  These are worth bookmarking . . . just in case.

Nursing has changed with technology, but there will never be a substitute for the nurse's kind hand or soft assurances.  Anybody who interacts a lot with the health care system will tell you that nobody matters more than nurses, from the patient's perspective.  But we need more nurses, and it's a demanding profession.  Can it keep up with demand?

Americans are happier than ever, says a new Gallup poll.  Sometimes I read polls and wonder who they actually polled.  Because I'm not feeling this one -- are you?  Hundreds of thousands of unemployed workers have lost their benefits, for example.  I'm guessing Gallup didn't poll them.

And now I'm off to the Connecticut Health Insurance Exchange Health Plan Advisory Committee meeting.  I don't have any idea how this is going to go, but I'm nervous.  Wish me luck!

And have a great day!  Jennifer

Friday, May 11, 2012

The End

Of the week, that is.  A very long week marked by much pain and a little fear over an infection gone wild -- life with chronic illness.  The swelling and pain are better -- not gone, but much better.  Now, I switch gears to getting ready for my annual cross-country pilgrimage to the West coast to visit with Pearl Jam's Mike McCready and his wife, Ashley O'Connor, for part of the Flight to Mars tour.  Good music, good causes, good friends -- what more can you hope for?

First, the news.

An FDA panel has backed the use of a preventive HIV drug.  What a wonder -- just great news.  But availability is always an issue.  For example, when Medicare reimbursement rules for anti-anemia drugs for dialysis patients changed, the drugs were prescribed less, but blood transfusions climbed.  Way too often, it comes down to money.  And that is where we go wrong in America.  Health shouldn't depend on whether you have enough money to afford it -- especially since illness is likely to change your financial status, as well as your health status.  But still, the House passed a budget slashing $310 billion, mostly cutting programs for the poor, many of which touch on health care.  Although Congress had agreed on automatic defense cuts if the super-committee was unable to trim the deficit -- part of the debt ceiling bargain -- the House GOP is changing its tune, preferring to cut food stamps, the children's health program, Medicaid, Meals on Wheels, child abuse prevention -- and on and on.  In a GOP world, the rich get richer and try to make the poor invisible.  Until the middle class becomes poor, and then what? 

And then you have Chris Christie, Governor of New Jersey, vetoing a bill to create a health insurance exchange. I get that he's against health reform.  And he talked a lot about the uncertainty created by the Supreme Court case.  But the exchanges should be built regardless of what happens to the federal law.  They are marketplaces where individuals and small businesses will be able to shop for, compare and buy insurance.  How is that a bad thing? 

In a good move, though, Medicaid payments to primary care providers will increase next year.  It is critical to find a way to entice new doctors into primary care, and increasing reimbursement rates will help.  This is yet another piece of health reform.  Although Medicaid is paid for jointly by the federal government and the states, this increase will be funded completely with government dollars. 

Should medical bills be itemized, so you know what your doctor did and what he/she charged?  It's interesting -- in any other industry, could a vendor get away with not telling you what they charge for their services?  Why should health care be different?

A new report shows that we have made little progress in eradicating racial disparities in health care.  There are some small improvements, but overall, there's been little change.  This problem is going to take more than just talk.

Finally, we end the week with another poignant post from the young woman undergoing a bone marrow transplant -- this one on posting your cancer on Facebook, being sick in the age of social media.

And there you go.  Have a great day and a great week-end!  Jennifer

Thursday, May 10, 2012

Connecticut Call to URGENT ACTION!!!!

I can't write a regular blog post today.  I'm just too upset.  For months, we have been trying to get the Connecticut General Assembly to add consumers to the Board of the Health Insurance Exchange.  Since the Exchange -- the marketplace where we will be able to shop for and buy insurance -- will be for the benefit of consumers, it makes the utmost sense to include consumer voices to the body that will be setting up the Exchange.  But our General Assembly and the Malloy administration have excluded us.  Even the Healthcare Advocate is not a voting member.

There are four advisory committees to the Exchange Board and I am on two of them.  Next Monday, the Health Plan committee will make a recommendation about the essential health benefits package -- the floor for what all insurance plans written in Connecticut will have to cover.  The information we were given by the Exchange staff is totally insufficient.  They've told us that if we choose a plan that covers the "mandates" -- coverage that is required by state law, like the first $1000 of ostomy supplies, wigs for cancer patients, overnight stays for mastectomies -- we may end up (maybe, if the feds make a change in 2016) having to pay for those to the extent that people are getting subsidies to buy policies that include them.  That's a straw man -- yet another excuse to try to rob consumers of the benefits of these mandates, for which we fought for years and years to achieve.

There are a zillion questions implicated by the choice of the EHB.  I sent an email to the Board, advisory committee members, and Exchange staff asking several of those questions:

Dear all:

I have some questions and concerns that I thought it might be useful to share in advance of our scheduled meetings to discuss the EHB.  While the so-called “mandates” certainly are one factor, there are many other issues to consider.  I wonder if staff could help to pull together some additional information that I think would be instructive.  For example:

1.       Which of Connecticut’s “mandates” fall within the 10 areas that the ACA requires to be included in the EHB?  For example, mental health parity is mandated by federal law, so as a Connecticut “mandate,” this adds nothing to the cost for Connecticut insureds.  Similarly, coverage of children to age 26 under their parents’ policy is mandated by the ACA and, thus, there would be no cost to Connecticut of having an EHB that matches this requirement.  This is true for many of the Connecticut coverage requirements.

2.       In Appendix II, you have indicated where the possible benchmark plans match or do not match the 10 ACA requirements.  However, what you have not told us for each service is whether there are limits on those benefits.  For example, in Appendix II, you state that rehabilitative services are covered, but you do not state the limitations on rehabilitative services, some of which are indicated in Appendix III, but in comparing benchmarks, it is very important to consider not just whether a service is covered, but also the extent to which it is covered.  Is there a limit on outpatient mental health visits, for example?  Visit limits are something we should look at; it’s unclear whether states can choose a benchmark but without visit limits.

3.       In Appendix III, you include a Cigna plan and an Aetna plan.  However, these are not listed as among the potential benchmarks.  Why are they included here?

4.       How did you decide what services are included in each of the ten ACA-EHB categories?  For example, I would have included physical, speech, and occupational therapy under Rehabilitative and Habilitative.  It does not appear that you looked at these services.  The ACA creates 10 “buckets,” but what falls within each “bucket” is something that we have to try to determine.  I’m attaching a powerpoint presentation given by the Center on Budget and Policy Priorities and the Kaiser Family Foundation that illustrates this very well.

5.       While I know that it is critical that the EHB address the 10 ACA categories, shouldn’t we also be comparing the benchmark options regarding other categories of services?  For example, which plans cover imaging (ConnectiCare limits it, Oxford includes it, Anthem includes it, according to data on the plans found in  Similarly, Anthem and ConnectiCare cover home health care, but Oxford limits it.  To the extent that the benchmarks are very similar for purposes of the 10 ACA categories, don’t we need to look beyond those 10 categories to see which plan provides the best benefit package?

6.       With respect to prescription drugs, while the plans all cover drugs, the ACA and HHS guidance say that the plan must include at least 1 drug in each class (whereas Medicare Part D requires 2 drugs per class, and some categories are protected, like HIV, psychotropic meds).  Shouldn’t we know what each benchmark plan’s prescription drug benefit covers?  And shouldn’t we consider whether a plan excludes brand name drugs or uses specialty tiers for expensive drugs?

7.       What services are expressly excluded by each benchmark plan?

8.       What services require prior authorization and would that prior authorization requirement be carried over to an EHB modeled on one of the benchmark plans?

Of course, these are not the only considerations we should be looking at, but I feel strongly that we need at least this much additional information on all of the plans we are considering as benchmarks.  It would be helpful if staff could compile this sort of information before the advisory committees meet to discuss this most critical issue.  

My response?  I got a phone call from the Exchange staff saying that I shouldn't worry, all of these questions will be answered in good time.  For now, their communication to us is just "informational."  But the EHB is on the agenda for Monday.  Every month's agenda is already set.  There is no time to make a recommendation about the EHB at a later date.  I am nothing short of frantic about the possibility that such an important decision will be made by people who don't understand the basics, who haven't read the federal regulations, who aren't well informed.  

I don't know what to do to stop this, either.  What I can say is that if you are from Connecticut and you are reading this, PLEASE contact the Governor's office (800) 406-1527, the Lieutenant Governor's Office (she's also the Chair of the Exchange Board) (866) 712-6998, and your state legislators and tell them that their failure to add consumers to the Exchange Board means that the Exchange is not in compliance with federal law.  To find your state legislators, go here

It's sort of amusing (in a sick sort of way) that the argument AGAINST appointing consumers to the Exchange is that they don't understand the system well enough to make a genuine contribution, while it is clear that the Exchange Board members know far less about this than I do. But let me tell you -- there are a bunch of uninformed people who are about to make a decision that will govern the benefit structure of EVERY insurance policy sold in the State of Connecticut.  That they propose to do that without consumer input, and without even understanding the implications of what they are doing, is a complete outrage.  Please, please, speak up NOW.  Jennifer

Wednesday, May 9, 2012

Wednesday Wishes

Life with chronic illness.  You don't ever just get a tooth pulled or an implant implanted.  I saw three dentists yesterday -- oral surgeon, regular dentist, endodontist.  The oral surgeon thought perhaps I had an infection from a neighboring tooth that needed root canal, but the endodontist thinks I don't need root  canal and it's the implant.  My Crohn's expert -- the most fabulous Ellen Scherl at Weill-Cornell -- is really concerned because I take so much azathioprine, a chemotherapy drug that suppresses the immune system.  She wanted me to hop in my car and go to NY to see the top infectious disease doctor at NY Presbyterian.  By 5:30 pm, I was a dishrag, exhausted, fried, in pain.  And so I finally said: STOP.  If I'm supposed to fight off an infection, I need to get some rest and hope that my body does its job.  Today, the swelling is much better and the only really bad pain is from the incision from where the butcher oral surgeon sliced the gum open on Monday.  So I am hoping against hope that, if I can manage a couple of quieter days, maybe leaving work at a reasonable hour -- we had a board meeting last night and I left here at 9 pm -- with the antibiotics and everything, maybe this will heal itself.  And so it goes.  Because nobody with a chronic illness just gets a toothache.  It's always more complicated.

I think I'll distract myself with a little news.

Under health reform, the Department of Health and Human Services has the power to evaluate proposed health insurance rate increases of more than 10% and declare them to be unreasonable, but not to stop the increases from taking effect.  Apparently, insurers aren't at all concerned about HHS's declaration that rates are unreasonable.  However, the truth is that fewer insurers are seeking increases of more than 10%.  So they may not be afraid of the bad publicity, but they are changing their behavior -- so I say it's working! 

A new study says that states should limit the number of plans that offer insurance on the Exchanges.   This is one of the big decisions that states will have to make.  Should they allow any insurer to offer as many plans as they want, or should they study the plans for their value to consumers and limit the number of plans offered for sale?  The Utah model -- which has not been successful -- allowed any plan to be listed on their exchange; the Massachusetts model -- which has been successful -- evaluates plans and chooses the best options for consumers.  The Massachusetts experience showed the benefit of offering a carefully vetted limited number of plans.  Consumers seem to like this model better. 

HHS has awarded innovation awards that recognize the need for innovation in health care service delivery.  The truth is that we don't know what's going to work to control costs while promoting quality of care.  We need lots of these pilot programs and demonstration projects so we can test ideas and see what works.  Federal financial support is essential to that.  And that is part of health reform.

The FDA will announce today a plan to cut radiation exposure of children from imaging.  Apparently, the rate of kids getting CT scans has soared, and the machines don't include settings for kids.  The FDA proposes 4 settings for kids up to age 12. 

There's some good research on probiotics -- they may well help avoid digestive diseases.  For me, the hardest part is figuring out which probiotic(s) to take.  They're all different bacteria, so some people say you need 2 or 3 probiotics to really cover the bacterial map.  I take Align every day, and when I'm on antibiotics, I add Florastor.  I never know if it's really doing any good, but according to this new research, it may well be.  So I think I'll keep taking them.

A drug that's on the market for treating HIV has been shown to prevent it!  What a miracle that would be.  The FDA meets today to discuss whether to approve the drug for prevention.  Very exciting.

And that's it for this rainy Wednesday morning.  Have a great day!  Jennifer

Tuesday, May 8, 2012

Tuesday's Trials and Tribulations

Life continues to challenge those of us with chronic illnesses.  It was too much to ask for, having a tooth extracted and an implant implanted without a major infection.  So my face looks crooked, with only half a smile while the other half is blown up like a balloon and throbbing.  A butcher of an oral surgeon sliced it open yesterday, but it didn't drain enough, so I will be back at the usual oral surgeon (who was off yesterday) today to see if he can resolve this infection.  It sure does hurt -- especially to eat even soft food.  Just what I needed a week before I travel to Los Angeles.  I just hope it heals quickly.

So now you know why I didn't blog yesterday.  But before I go any further, I must thank Tyler Perry and, of course, Ozzie, Jen, and Tony, for arranging for us to visit backstage on Saturday night.  I learned a lot, actually.  I've never really listened to Mr. Perry's alter-ego Madea before.  She seemed to be a pretty stereotypical southern Black woman, and I never really understood why Mr. Perry would want to foster that stereotype.  But that's because I wasn't listening.  Madea went on and on Saturday night, about how important it is for women not to take abuse from men, about how important it is to go to school an foster good values.  It was a life lesson and Madea was only the vehicle -- a way for Mr. Perry to teach African-Americans through humor, without preaching at them.  It was a revelation for me -- and now I know why Ozzie chose Mr. Perry to work with and for.  Check him out some time.

Now, for some news.

Health care is out of reach for millions of Americans, according to a new report. One in five Americans under age 65 had trouble accessing care, largely due to cost.  As employers switch to high deductible plans, workers have an increasingly difficult time with their out-of-pocket costs.  If you don't have $7500 or $10,000 for a deductible, having health insurance doesn't get you very far.  It's really there only for catastrophic coverage.  And poor and uninsured adults are having a harder time getting a doctor to see them.  This trend is so scary.  Too many people aren't getting the care they desperately need.  The unmet need is worst in Tennessee, Florida and Georgia.

In the face of all of this, the GOP, once again, is pushing to reverse impending cuts to military spending without raising taxes, which means cutting social programs even more.  Every day, I hear from at least one person who's desperate for help -- no money, no health insurance.  I spoke with a woman yesterday who has lupus and whose son is autistic.  She works as a paraprofessional in a school, caring for special needs children.  But it's contract work, so no benefits, no pay during vacations (including summer).  She used to have food stamps but they've been cut from about $300 per month to $45 per month for 2 people.  She's desperate and doesn't know where to turn.  The more upset she gets, the worse her lupus gets.  She and her son are on HUSKY through the State.  Cut those benefits and she may well end up unable to work, costing the system far more than she's costing now.  Why is it so hard for people to understand that it doesn't save money to keep people from getting the care they need?  It's this attitude, that somehow the poor and sick are to blame for their own misfortune, that has one GOP Governor (Maine) saying the unemployed should get up off the couch and get a job.  It's such a simple thing -- there but for the grace of [insert deity of choice] go I.  Why is it so hard for some people to feel compassion?

More on specialty drugs and how insurers are shifting the cost to patients -- and mostly patients with chronic illnesses. Employers and insurers are looking for ways to control the costs of specialty drugs -- mostly biologics like Remicade, Humira, Cimzia, Enbrel -- as well as other infusion drugs like IVIg.  They're deliberately trying to discourage the use of these drugs.  But for the patients who respond well to these meds, it's the difference between being able to function and not being able to function.  Imagine you finally find the drug that keeps your rheumatoid arthritis in check, and the powers that be are doing all they can to make it hard for you to get it.  And for patients with MS. Crohn's disease and others, not using these drugs means disease flares and, ultimately, far more expensive medical care. 

42% of Americans will be obese by 2030.  That's staggering.  It tends to mean increase health costs, too, as more people get diabetes and heart disease as a result.  An estimated $550 billion over the next two decades.  Should insurance companies cover the cost of gym memberships and weight loss programs? 

Governor Andrew Cuomo of New York has announced a new plan to provide better care to the disabled and, in particular, to improve the State's response to complaints of abuse and neglect.  He proposes to create a new state agency that will respond to the mentally ill, developmentally disabled, traumatic brain injury victims and others.  At a time when cutting the size of government is popular, I give Governor Cuomo credit for trying to do the right thing. 

And that's it for this morning.  Wish me luck with the oral surgeon.  Have a great day!  Jennifer

Friday, May 4, 2012

Brad Pitt, Tyler Perry and Advocacy for Patients

Many of you already know my Brad Pitt story.  But today it took a new and incredibly amazing turn.

About ten years ago, when I first found, I met a wonderful woman named Barbara.  She told me about a young woman named Ellen who had Crohn's disease and gastroparesis.  She was terribly sick, vomiting 30 times a day, not keeping anything down.  We thought she might die.  Barbara -- who has an extraordinary heart -- said we should do something for Ellen's 26th birthday.  All Ellen wanted was to meet Brad Pitt.  "Jennifer, can you try?" she asked?  Sure -- I'm not beyond begging movie stars when it comes to life and death.  So I wrote a letter and then I heard from Ozzie, Brad Pitt's assistant.  Ellen and I spoke to Ozzie for months; of course, he had to make sure we were legit, and he really loved Ellen.  After a time, Ellen and I sort of figured that she'd never hear from Mr. Pitt, but we were so happy to have met Ozzie that it was all good.  Then, one afternoon, Ellen was napping and the phone rang.  "Hi, Ellen?  This is Brad."  They talked for two hours.  And then Ellen ate scrambled eggs and took a walk around the block.  Amazing what the heart can do.

When Ellen got well enough -- which she did -- Ozzie flew her out to LA, put her in a hotel on Rodeo Drive, Mr. Pitt and Ms. Aniston took her to The Ivy, Ozzie took her to a taping of Jay Leno's Tonight Show -- and best of all, Ellen got to hang out in Jennifer Aniston's dressing room during a taping of Friends.  Ozzie had made sure that George Clooney would just sort of drop by.  Ellen was over the moon.

Ellen passed away on December 19, 2011.  She had 10 years that she might not have had without the lift that Ozzie, Mr. Pitt and Ms. Aniston gave her.  At least, that's what I believe.

Anyway, Ozzie went on to be Tyler Perry's assistant -- and climbed the ladder to become President of Tyler Perry Studios.  Go Ozzie!

I have a miraculous client and friend, Crystal Emery.  She has a rare disease that leaves her wheelchair bound, without much use of her arms and legs.  But Crystal runs a nonprofit called URU The Right to Be.  She makes documentary films focusing on racial and ethnic disparities in health care.  How on earth she does this, I do not know.  When she travels, she has to have a hospital bed delivered to her hotel room -- but that doesn't stop her -- she goes!  I'm a complete wimp next to Crystal.

Crystal's dream is to meet Tyler Perry.  Can you guess where this is going now?

I once told Crystal about Ozzie.  In fact, when she asked me to, I forwarded him a script she was working on.  Nothing happened, and that's okay -- Ozzie already did enough to make me love him forever.

But a couple of months ago, Crystal saw a commercial for a play Tyler Perry is touring in called Tyler Perry's Madea Gets a Job.  He was coming to Hartford on May 5.  "Jennifer, could you please ask Ozzie if I can meet Tyler Perry?"  Sure -- why not?

Tomorrow night, Crystal, her husband, her friend and I are going to see Tyler Perry's play, courtesy of Ozzie.  And after the play, we are going backstage where Crystal's dream of meeting Tyler Perry will come true.

And so it goes, good comes from good, as another amazing friend Terry Schaefer taught me years ago.  I hope Ellen is up there smiling, knowing that Ozzie is about to do for Crystal what he did for her years ago.  This time, I actually get to be there and see it happen.  I can't wait.

I am so privileged to have this work -- which leads me to people like Barbara, Ellen, Ozzie, Terry, Brad Pitt, Tyler Perry -- and best of all always, Pearl Jam's Mike McCready and his wife, Ashley O'Connor.  I'm not big on religion, but I think this is what people mean when they say they are blessed.  Jennifer

This Week's NY Times Puzzle

The answer is here

Some day, I'm gonna win one of these!  J

Fabulous Friday!

Two interviews left, but I think I've found not only the next Advocacy for Patients staff attorney, but perhaps the next Executive Director -- a smart young lawyer with a chronic illness, so she "gets it," and this is her dream job.  I'm so excited.  But I have to play out the process, so I'll consider the possibility that someone else will really knock my socks off.  But first, the news:

We have some treats today.  The young blogger who's undergoing a bone marrow transplant has posted her newest installment.  This post is about what it's like to talk to family and friends about your illness.  Dr. Pauline Chen's latest essay is about a health center that closed -- and flowers.  Lovely, as always.

The health reform law requires insurers to cover kids under age 19 with pre-existing conditions.  But how has the insurance industry responded?  Some companies have left the child-only market.  Some have raised premiums for kids, which they're allowed to do until 2014.  Insurers claim that this allows parents to sign up their kids only when they get sick -- the argument they always make about covering people with pre-existing conditions in the absence of an individual mandate, which makes healthy people buy insurance to spread the cost of people who are sick.  And this is why the Supreme Court's decision on the individual mandate means everything to getting coverage of pre-existing conditions. 

The architect of Paul Ryan's Medicare plan -- converting to a voucher system -- says the plan won't work!  He explains that the failure of Medicare Advantage plans to help control cost -- indeed, they are more expensive than traditional Medicare -- demonstrates that turning things over to private insurers will not shrink costs.  He says we should implement the Exchanges created by the health reform law and see how that works before going any further down the road to privatization.  So much for the GOP's plan to "save" Medicare! 

The President is trying to build support by the health reform law, finally realizing that they failed to communicate the true benefits of the law well enough early on.  Is this just campaign rhetoric, or is the Administration really realizing that they blew the communication piece of reform?  Is it too late to change public opinion of reform, with the Supreme Court decision looming large?  I wish they'd done this two years ago, but better late than never.  The latest GOP lie about reform:  Money went to fund neutering of pets.  It's not true.  But some people will say pretty much anything for political advantage.

Oregon is getting a financial boost from the federal government for testing a novel way of paying doctors who treat Medicaid patients.  The new system will focus on care coordination, and include teams of doctors who are paid for health outcomes.  Sort of like mini-Medicare ACOs (see yesterday's post).  It's expected to reduce costs by about 2 percent.

And that's what grabs me in today's news.  I'll be back later with the result of yesterday's NY Times puzzle!  Have a great day!  Jennifer

Thursday, May 3, 2012


Good morning!  I am thoroughly exhausted from interviewing while trying to stay on top of the rest of my work.  Hard decision, hiring a staff attorney, but I'm narrowing things down.  I hope.  In the meantime, I've had little time to keep up on current events during the day, so let's see what we have this morning.

My favorite!  A NY Times quiz!  So we have here a woman with diabetes whose eye doctor saw an abnormality on an exam and sent her to a specialist.  She had no real symptoms, but a bit of a medical history which you can read in the Times.  They've given us very little to go on this time.  Apparently, the specialist asked her one question that she'd never been asked before and that led to her diagnosis.  The challenge?  What question did the doctor ask her?  I have no clue, but I can't wait to find out!

The politics of health care will affect the upcoming elections -- not just the presidential elections, but races all over the country.  We know that two conservative Democrats in Pennsylvania who voted against reform already lost their seats in primary fights.  Politico analyzes 5 key races.  This comes amidst news that, once again, the United States spends an astronomical amount of money on health care when compared with other countries -- about $8000 per person. 

Medicare accountable care organizations (ACOs) may dramatically transform healthcare.  Instead of seeing one doctor who gets paid for each service he/she provides, in an ACO, you have a team of doctors who work together and get paid a lump sum to care for your health needs, with the amount of the payment tied to health outcomes.  The idea is to pay for value rather than volume.  So interesting -- the potential to make a better system is very real.

A new Republican report says that large employers can save a bundle if they stop offering health insurance, shifting people to buying coverage on the Exchange.  However, every indicator is that they won't stop offering coverage.  It certainly hasn't happened in Massachusetts.  Offering health insurance provides some tax advantages, and it helps ensure a healthy work force.  In my opinion, it also inspires loyalty.

Over 100 people have been charged with Medicare fraud on a grand scale, with money laundering and kickbacks and the whole deal.  The fraud was valued at $452 million.  This doesn't save the federal budget, but it's a start. Under health reform, Medicare and Medicaid fraud prosecutions have become priority.  One place we can all agree we should be trying to control costs is fraud and waste.  Indeed, a bipartisan group of Senators has asked health care providers to help root out fraud.  It's great that the feds are taking this seriously and rooting out this kind of fraud and exploitation. 

A new study shows that the US has as many premature births as developing countries.  Although we do better in keeping those babies alive, why aren't we doing a better job of caring for pregnant moms so they don't give birth prematurely?  The explanation is that we have a combination of teen pregnancies and pregnancies in women over age 35, especially if they have in vitro fertilization followed by implantation of twins or triplets.

Finally -- but I hope you're still reading because you shouldn't miss this -- the miraculous Atul Gawande has written an 8 page paper summarizing the 200 year history of surgery.  Anything he writes is worth reading -- this piece shows his sense of humor as well as his brilliance.

And that's it for this morning.  Have a great day!  Jennifer

Wednesday, May 2, 2012

Wassup Wednesday!

What's up, you ask?  You've come to the right place.  Our search for a staff attorney continues, but I interviewed some great candidates yesterday, so I know for sure that we'll have somebody great on board pretty soon.  In the meantime, here's the news:

Do you have a Facebook page?  Do you want to be an organ donor?  Facebook has created a way to indicate whether you are an organ donor on your Facebook page.  It's really intended to raise awareness of organ donation and get people to sign up more "officially" at Motor Vehicles or an online registry.  I don't see it yet, but there will be a new section on your profile called Health and Wellness, and that's where you'll say whether you intend to donate your organs.  You will still need to register in your state, but this is a way to make people think about -- and I think it's absolutely great.

There are chronic diseases that can't be prevented -- Crohn's disease, MS, lupus -- the list is endless.  But there also are chronic diseases that can be prevented, at least some of the time -- type 2 diabetes, high blood pressure, for example.  A study in California found that the state retirees health plan spent $1.6 billion on avoidable diseases in 2008, and 22.4% of current employees' health care went to preventable diseases. Are you doing all you can? I'm quite sure I'm not.

Here's the text of a speech by Dr. Otis Brawley, Chief Medical Officer of the American Cancer Society, talking about how badly the health care system is broken, and who's to blame.  I like a lot of what he says, but I'm not sure I agree that patients are partly to blame because they want to over-utilize medical care.  In my experience, most patients want only the care they need, and nothing more.  I avoid my doctors as best I can.  I do want what I need to be able to keep functioning, but I'm not looking for anything more.  However, the rest of what Dr. Brawley says is insightful.  The system is geared at making people -- providers, pharmaceuticals, insurers -- wealthy.  As long as that's the primary goal, the obstacles to getting care will remain.  We need a health care system whose goal is to achieve health, not wealth.

Should nurse anesthetists be allowed to administer anesthesia without the supervision of an anesthesiologist?  If you're in a rural area where anesthesiologists are hard to find, maybe this is the way to go.  Doctors are suing to protect their turf, but if they aren't available everywhere, why not allow this alternative -- as long as it's safe.  I suppose that's really the question, though.  Nurse anesthetists say they are trained and capable.  But should a doctor have to be nearby just in case?  I'm torn.  What do you think?

Your kid gets rushed to the hospital after suffering a traumatic injury.  You race to the ER and, when you arrive at your child's side, you are ushered outside so as not to get in the way of the doctors.  The fear is that hysterical parents can distract doctors.  However, a new study shows that there's no down-side to allowing parents to stay in the trauma room.  Indeed, I suspect filling the room with love can only help.

That's it for this morning.  Have a great day!  Jennifer

Tuesday, May 1, 2012

May Day!

Happy May Day!  The coming of spring, the tantalizing tease that leads us into summer.  Today, I begin interviewing 15 lawyers for our staff attorney position.  I have 7 interviews scheduled today, leaving very little, if any, time for actual work.  A little stressful, to say the least!  But I have no doubt that someone will rise to the occasion and be right for us.  Indeed, I'm sort of excited to pick someone with energy and enthusiasm about what we do.

But first, the news -- and it's Tuesday, which means it's a big health news day.  Let's see ....

The Governor of Minnesota is trying to move forward with health reform implementation without the support of the state legislature, which is dominated by anti-reform Republicans.  Similar stand-offs are occurring in several states.  In New York -- not exactly a conservative bastion -- Governor Cuomo has created an Exchange by executive order because he couldn't get it through the legislature.  If the law survives the Supreme Court, the federal government will operate Exchanges in states that won't do it themselves, which isn't a desirable outcome for anybody.  Exchanges are marketplaces where people will be able to shop for and buy insurance.  You can be against aspects of reform and still be in favor of creating smarter consumers.  You consumers should be making a fuss if your state is not moving towards an Exchange. 

What happens if the Supreme Court strikes down the law?  The GOP is split on how to replace health reform.  It's not looking good for coverage of pre-existing conditions. Tax credits.  They want to give us tax credits.  As if that's going to be available to pay the doctor or the pharmacy.  They can't even agree on whether young adults to age 26 should be able to stay on their parents' policy.  For those who are against reform, be careful what you wish for.  Reform has saved seniors $3.4 billion in prescription drugs.  And that's bad because.....?

Meanwhile, Massachusetts is looking at phase two of reform, payment reform.  They've achieved near universal coverage; the next step is to control cost, and so they are launching a new payment methodology that would pay a global payment rather than a flat fee for services performed.   They would get a payment covering a group of patients and focus on health outcomes.  Bonuses are earned by the success of treatment.  I'm not sure how it will work, but it's intriguing -- I need to learn more about this.

Patients present at the emergency room with dental pain seeking narcotics.  Is it for real or are they drug seeking?  Pain meds are prescribed in 3 of 4 ER visits.  Some of them need pain meds, for sure.  But how does an ER doctor know whether the patient is in real pain or if they are drug seeking.  Some err on the side of treating, but I hear stories all the time of people being sent away with nothing.  Hard decisions -- we don't need to create a bunch of addicts.  One of these days, we'll find a way to test people for pain.  Until then, I say I'd have to go with my gut and err on the side of treating.  Tough choices, though.  Meanwhile, the number of women who give birth while addicted to opiates, producing addicted babies, is soaring.  This is tragic; the poor babies, born into drug withdrawal. About one baby born per hour is an addict.  Staggering.

A woman with stage 4 breast cancer chooses palliative care rather than treatment.  I decided a long time ago that, the next time I get really, really sick -- whatever it is -- I will not fight.  I've fought enough.  So I get this woman's decision.  She tells it well -- the doctor who outlined all the treatments, all the hell he'd put her through, just to buy a little more time.  A little more suffering time?  No thanks.  We all go, and if we're lucky, we have something to say about how and even when.  In the patient's calculus, quality of life may mean as much as living a few more months.  It's the patient's choice -- or it should be.

Two new studies find that woman over age 40 with risk factors (for example, a sibling or parent with breast cancer) should get mammograms every other year, attempting to quell the controversy over the frequency of mammograms.  The recommendation is personalized medicine, a decision based on the patient's history rather than a one-size-fits-all prescription. 

Here's one to watch for.  If you go to the hospital and stay for "observation" without being admitted, your insurance company won't pay as if you were inpatient.  This primarily is a Medicare issue, but don't be surprised to see commercial insurers following suit. 

Sleep may help you avoid the genetics of obesity.  If you're prone to being overweight but sleep a lot, you may be able to overcome your genes and avoid weight gain.  I think this is the best news I've ever heard!  Now, I have yet another reason to sleep!

The Connecticut Department of Social Services proposes a new payment model for people who are eligible for both Medicare and Medicaid due to illness and poverty.  Part of the plan would give extra payments to providers who save money -- an incentive to limit treatment.  The State simply rejects the clear logic of that argument.  This isn't looking good.

And that's it for this Tuesday Morning.  Have a great May Day!  Jennifer