Tuesday, July 31, 2012

Breaking News

Senate Majority Leader Harry Reid and Speaker John Boehner have reached a deal to keep the government funded for six months, meaning there will be no threat of a government shutdown when the fiscal year ends Sept. 30. The funding deal would keep government spending at current levels through March 2013. Both chambers of Congress will likely vote on the resolution in September. 

This means that funding will continue through the election, avoiding embarrassment to either or both parties.  Jennifer

Tuesday Tidbits

 Health insurance for Olympians.  Not all you might think it would be.

If your insurer did not meet the medical loss ratio rules (spending 80-85% of premium dollars on health care, they have to pay rebates by August 1.  Over $1.3 billion in rebates will have been paid this year.  You still don't think health reform is starting to deal with cost?

As in Massachusetts, the idea was a two-phased approach to health reform,with phase I focused on increasing coverage and phase II on cutting costs.  Massachusetts is as stage II, and the legislation is now awaiting legislative action.  It would key health care spending to a percentage of the gross state product (GDP but for states), create an oversight agency to collect data and help establish health policy.  We need to watch this carefully -- what happens in MA may well happen nationally, eventually. 

So if states like Texas opt out of health reform's Medicaid expansion, who covers the cost of care for the poor in Texas?  The taxpayers of the State of Texas, of course.  Even more evidence that the only reason to pass up the Medicaid expansion is spitefulness towards anything President Obama does -- it's  certainly not because it's in the economic interest of Texans since the Medicaid expansion would cover at 100% federal funding for the first couple of years, and then gradually decrease to 90% federal funding.  Thanks, Samir, for the link.

Still, the GOP is all about cutting Medicaid.  They want to convert it to block grants, which would mean drastic cuts in some states.  That's because the feds enforce certain coverage requirements; without those requirements, states could cut costs -- and care -- greatly.  Not exactly a good thing in my book.

Meanwhile, the insurance industry is trying to get rid of the fees (they say tax) they have to pay to help finance health reform.  Highly unlikely to happen with the rest of health reform intact.  Yet another reason to worry about repeal under a GOP-led White House and/or Congress.

How can you help to control health care costs?  Here are a bunch of tips from Consumer's Reports.  Know your coverage.  Stay in network if you can.  And if you go out of network, do your homework on the cost ahead of time.

A few weeks ago, we learned that Florida closed the only tuberculosis hospital in the state amidst a tuberculosis outbreak.  Now, we learn that patients with tuberculosis were sent to a hotel instead.  Not a licensed medical facility.  No ongoing medical attention.  A hotel.  How is this not a scandal?

Remember the debt collector that was showing up in ERs wearing scrubs, hassling people about their bills before they even saw a doctor?  They settled with Minnesota for $2.5 million.  If you ask me, that's a gift.

There were a lot of stories last week coming out of the international AIDS conference that took place in Washington.  The stories were optimistic; some even see a cure in sight.  We need to be reminded, though, that we're not there yet -- there's still a long way to go.

Women live longer than men, but their brains deteriorate earlier -- possibly due to increased stress.

Gradual exposure to food allergens may overcome allergies.  But please, talk to your doctor before you try this.  You don't want to send your kid into anaphylactic shock!

Massage may have significant benefits for both physical pain and mental ills.  Can you get it covered by insurance?  If it's performed by a physical therapist and coded as physical therapy, maybe!

And that's it for now.  Have a great day.  Jennifer

Monday, July 30, 2012

Monday Morning News

The health insurance plan of champions.  Maybe.  Here's the Olympians' insurance plan.

The GOP says covering the uninsured no longer is the top priority in fixing health care.  The goal should be reducing costs.  Hmmm.  Can't we try to do both?

Oklahoma is not a place that's welcoming health reform with open arms.  They've turned down a $54 million grant to set up an exchange, and people say they are not going to buy insurance.  They call it a frontier mentality.  I call it short-sighted.  Say what you will about health reform -- how can there be anything bad in being able to shop for it and compare plans and prices before you buy?  How can there be anything bad in at least having the choice of whether to buy health insurance -- a choice too many Americans don't have due to pre-existing conditions or premium prices without subsidies?  The system is broken and needs fixing.  Why not at least see how the best ideas the smartest people could think of -- both Democrat and Republican -- work before you decide it's a failure?

We have a shortage of primary care doctors, and it's likely to get worse as health reform takes full effect and more people need access to primary care.  Indeed, in some parts of the country, the shortage extends to specialists, as well, creating long wait times to see a doctor.  Part of the reason is that people are living longer, and the elderly typically need more health care, so there's more demand without a corresponding increase in supply.  How do we make medicine an attractive profession when there is so much uncertainty in health care and what it will pay in the future?

Most HIV positive Americans lack regular health care.  Considering the fact that HIV is survivable now with regular care, it's tragic that this many people are going without.  The health reform law should help, though, by getting more people covered.

Tennessee's Medicaid program cuts benefits for nursing home, instead providing services in the home.  Will this turn out to be a good thing, keeping seniors at home longer, or is this just a budget cutter that will harm seniors?  Too soon to tell.

How should doctors deliver bad news?  I remember after my first surgery, I was so afraid that I would be waking up with an ostomy.  When I did wake up and started asking what was under the huge dressing on my abdomen and nobody would tell me.  Until a nurse finally said I'd had a colectomy.  The only problem is that I had never heard that word before and didn't know that it meant a resection, no ostomy.  I kept asking and asking -- it was over 24 hours before I got a straight answer.

I don't think commentary is necessary with this story.  Read it for yourself and decide what lessons there are to be learned from this tragedy.

A profile on the Board president of the National Alliance for Mental Illness.  A great organization we have the privilege of working with locally here in Connecticut.  Is there any other disease that can land you handcuffed in the back of a police car?  We know what insurance companies do with mental illness, but it goes far beyond that.  If you don't get it, read this article.  And watch the commentary on Jesse Jackson Jr., as it is disclosed that he is at the Mayo Clinic being treated for depression and gastrointestinal issues.  Will depression be dealt with like any other illness befalling a politician?

We hear a lot about sexual abuse, physical abuse, but what about emotional abuse?   In fact, psychological abuse -- demeaning, bullying, humiliating your children -- is the most common form of child abuse.  And we don't see it, don't deal with it, don't treat it as abuse. 

Eat like the athletes?

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

Friday, July 27, 2012


Finally, it's Friday.  One more day and I get to rest, to make up for traveling instead of resting last week-end.  I'm completely spent.  I actually walked out of my office at 6 pm last night -- I didn't have another hour in me, not to mention another day.  I need to keep my head down, my mouth shut, and just get through this day so I can rest.  And have a really good, big, sobbing cry for all I lost this week.  But first, the news:

Congressional leadership is trying to cut a federal funding deal that would avert a government shut down before the election. According to The Hill, conservatives feel they have the most to lose in another funding stand-off leading up to the election.  They're arguing about whether to extend three months, until the end of the year (the current funding runs out at the end of the fiscal year, which is September) or six months, which would put off hard choices until after the new Congress and, potentially, President are sworn in.  Of course, the big fight at the end of the year will be the expiration -- or not -- of the Bush tax cuts. President Obama wants to extend the cuts for people earning under $250,000; the GOP wants to extend them for all income levels. 

Health reform has saved seniors more than $4 billion in prescription drug costs.  The doughnut hole continues to shrink -- a very good thing.

Hospitals receive federal funding to cover the cost of charity care.  That fund gets cut in half by health reform.  Yet, since illegal immigrants aren't eligible for Medicaid or subsidies to help them buy insurance, they will still seek care in emergency rooms.  But there won't be as much federal funding to go around.  Hospitals are worried. 

But they are doing the right thing by the victims of the Colorado shooting.  For those patients who are uninsured and underinsured, hospitals are writing off the charges.  You have to give them credit for doing the right thing in this case.

Los Angeles has banned medical marijuana dispensaries, and some say the beneficial effects of pot are overstated.

Did you know that the heat wave could be affecting the way your medication works?  I didn't.  This explains a lot.

Disability rights advocates have sued Walmart for placing payment machines out of reach of people in wheelchairs and scooters.  I'm not a Walmart shopper, so I'm not sure what these payment machines look like -- but I support efforts to ensure accessibility for all. 

The Physician's Committee for Responsible Medicine says Michelle Obama is focusing too much on exercise and not enough on good nutrition.  This got them a little press, but really, hasn't she been talking about growing your own veggies, teaching kids to like veggies, changing school lunches, all along? 

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

Thursday, July 26, 2012

A Big Day for Connecticut

The essential health benefit package (EHB) is going to be the blueprint for all individual and small group insurance starting January 2014 -- the package of benefits that must be covered.  Two advisory committees to the Exchange Board here in Connecticut have studied the issue, and today, our recommendations will be reported to the Board.  We worked very hard on this, spending months pouring over data, trying to choose a benefit package that balances affordability with comprehensiveness.  For months, we've been told that our recommendation would go to the Board, then the Board would make a recommendation to the Governor, and the state's final decision would then be communicated to the federal government.  Since both advisory committees chose the same compromise, you'd have thought that would carry a lot of weight with the Board.  However, it appears that the rules of the game are changing, that when we were told we had no more time and no more information, in fact, there was time for a 30 day comment period -- something nobody ever said was going to happen.  Is this just a nod to democracy, or is this a pretext for rejecting the advisory committees' recommendations, substituting them for a more restrictive suite of benefits?  I have a bad feeling about this.  Add to that the expectation that the anti-abortion Family Institute of Connecticut is planning to turn out in force to protest against insurance coverage of abortion, and this promises to be a red letter day.  Ugh.

UPDATE:  The Exchange Board has taken the matter of the EHB under advisement, with a vote expected at their August meeting.  The 30 day comment period  is for approval of the PROCESS for selecting an EHB.  Board members did ask about cost data, and one Board member in particular was concerned about selecting a plan that includes all statutory coverage mandates.  However, as was explained, those statutory mandates can only be changed by the General Assembly.  There were some anti-choice folks in the audience, but only one gave public comment.  So all in all, it was a less eventful meeting than anticipated -- and that's a really GOOD thing! 

Meanwhile, here's proof of the harm that will be done by states that refuse the Medicaid expansion.  Medicaid eligibility lowers the death rate.  Give more people access to health care and you save lives -- plain and simple.  And so if you withhold a Medicaid expansion that costs the state nothing in the first few years, and never goes below 90% federal funding, you are sentencing some people to death.  Nothing short of a life and death choice.

Minorities may have more to gain from health reform.  Higher rates of uninsurance is fertile ground for a huge advance when affordable insurance is available to all.

But here's a great step forward -- the federal government and private insurers are going to team up to put a dent in health care fraud.  By sharing and comparing claims data, they can find patterns of fraud and waste -- and bring in huge savings.  About time.

A group of doctors have filed a citizens petition with the FDA asking for new rules for prescribing pain meds.  We've all read about the overdoses and the selling of prescription drugs on the street.  But these sorts of restrictions have threatened the health and well-being of millions of patients with chronic pain.  There has to be a balance.

Do we in America use too much health care?  If so, is it driven by a medical system that profits off of over-use of its services?  Or is it driven by patients who hear about the latest and greatest treatment and can't wait to get their hands on it?  Tough but important questions.

If you have insurance, you're less likely to have advanced stage surgical cancer than if you're uninsured.  You still think health reform's goal of universal coverage is folly?

Can we cure HIV?  Scientists who gathered in Washington DC this week believe we are on the way.  I love the thought that, some day, we'll think back on the dark days of HIV/AIDS knowing that nobody will ever have to suffer with this awful disease again.

Do you talk about your illness?  Here are some thoughts on whether to tell or not.  As you know, I have always talked about mine, thinking that I could raise awareness and make it less scary for others to talk about their illnesses.  But it's important to be clear on what you're hoping for from others if you do tell.

There you go.  Stay tuned for an update on what happens in Connecticut today.  Since we're one of the states that's moving along on health reform implementation, what happens here today may affect what happens elsewhere.  So let's hope the powers that be for once resist the temptation to tinker with a democratic process to obtain the outcome they want.  Jennifer

Wednesday, July 25, 2012

Popping In

Good morning!  Sorry I've been AWOL -- I'm just exhausted, so I've been sleeping a little later, moving a little more slowly, this week, and trying to stay on top of things here in Connecticut.  It's also a really slow time in the political world -- people on vacation, the Olympics about to start, the August recess around the corner.  So this is a good time to take a break from the blog here and there.  But there are a few items worth noting, so here you go:

Due to the Supreme Court ruling regarding the Medicaid expansion, roughly 3 million fewer people will become insured in 2014.  This number represents the number of poor people who will not have the benefit of the Medicaid expansion because their Governor opposes health reform.  We should all be outraged.  For a state to turn down 100% federal funding out of spiteful hatred of President Obama, sacrificing the poor in the bargain, is wrong in every way.  The Attorney General of Virginia, who's been leading the charge against health reform, says states should not even set up exchanges.  He says a federal exchange can't impose penalties for failing to purchase insurance -- a point that, legally, is wrong.  But even so, what's so wrong with making it easier for consumers to shop for and buy insurance?  According to the non-partisan Congressional Budget Office, repealing health reform would cost $109 billion.  How is that a good thing, according to the deficit hawks?

Thirteen states are cutting Medicaid to balance their budgets.  Here in Connecticut, officials are trying to tighten eligibility requirements for low income adults, but thankfully, due to our legislative leaders, it's a tough sell to the legislative committee that would have to approve it.

Is it good that patients can now get their own test results, or should we be concerned that patients may misinterpret the results?  Or even worse, scare patients to death?

Believe it or not, that's all I can find that's noteworthy.  No news is good news, right?  I hope so.  Have a great day!  Jennifer

Thursday, July 19, 2012

Better Late Than Never?

Sorry I'm late this morning.  I slept an extra hour, which really is a good thing.  But let's get right to to the news.

As you know, when Congress was unable to agree on a plan to raise the debt limit and prevent a global economic crisis when the United States defaulted on its debt, they created a super-committee to figure it out.  When the super-committee was unable to get anywhere, automatic cuts were scheduled to kick in in 2013.  Now, people are unhappy with the automatic cuts -- the GOP is fretting over defense cuts, and the Dems are fretting over cuts to social programs. This one's going to be painful for us all.  The GOP wants to scuttle the deal now, but the President says they made their bed and now they need to lie in it.  I agree -- but I hate that poor, sick Americans are going to suffer even further for Congress's misdeeds.  Head Start, AIDS programs, child care all on the chopping block.  I don't know where this is going, but I find it hard to imagine a happy ending.

Meanwhile, the House Appropriations Committee voted to defund health reform.  If you can't repeal it, defund it.  But whatever you do, make sure those "unfortunate people" with pre-existing conditions don't get what they need.

The Governor of Maine not only wants to reject the Medicaid expansion; he plans to cut thousands of people from the Medicaid rolls, believing that the Supreme Court decision allows him to do so.  The health reform law prohibits cutting Medicaid eligibility and the Supreme Court did not address that part of the law at all.  But setting aside the constitutional questions, ARE YOU NUTS?!!!  Why would a state want to take away health care for the very poor?  What do they plan to do when those people get sick and can't get care? 

Most Americans believe that the Supreme Court's decision in the health reform case was based on the Justices' personal politics more than the law.  The thing is that personal politics, biases, proclivities inform all of our judgments one way or the other.  Supreme Court Justices are no different.  That's part of why it matters so much who's on the Court.  If it were a totally objective process, you could just use a computer to get a decision!  Justice Scalia denies that decisions are politically motivated, though.  And in case you were worried, he says he and Chief Justice Roberts are getting along just fine despite the Chief Justice's decision on health reform.

Here's a bit of a surprise.  Bill Frist, former GOP Senator and also a doctor, says Exchanges are innovative, market-driven, and constructive and the GOP should stop opposing them.  They used to listen to him -- I wonder if they will do so now. 

Lack of exercise kills as many people as smoking.  Oh, boy. 

The study of the human genome continues to spawn new understanding on a path to new treatments.  One large study has given researchers some hints about colon cancer that may lead to new treatments.  Very exciting.

However, another study is questioning surgery for early detected prostate cancer, finding that people who have surgery don't do a lot better than those who don't.

Regular, moderate consumption of alcohol may reduce women's risk of rheumatoid arthritis?  Really?  I don't know that I'm ready to bank on this one.

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

Wednesday, July 18, 2012

Everything's Wacky

I don't understand why, on our Facebook page, everything from the end of June is all of a sudden at the top of the page, and my posts from earlier this week are buried.  But I have bigger fish to fry.  I'm so tired that I'm having trouble walking and I have to go to Denver the day after tomorrow.  I don't have a clue how I'm supposed to do all of that walking and stuff.  Please let this be an easy trip. 

But first, I have to get through today and tomorrow.

The NY Times editorial board speaks on the Medicaid expansion and the harm being done by states that are threatening to abandon the poor just for the sake of opposing anything related to health reform.  Looking for money to cut from the budget, the programs that go are the programs for the poor and the sick.  It's heartbreaking and stomach-turning.  Just plain wrong.  States who opt out of the Medicaid expansion will leave millions of poor people without access to care -- they don't qualify for subsidies under 100% of the federal poverty level because Congress assumed they would be covered by Medicaid.  That leaves them with nothing.  They're calling it the new doughnut hole.  It's all federally funded.  What are the states worked up about?  Here's just one tragic story from Mississippi.  There are millions of stories like this one.

Can the GOP avoid another showdown over the federal budget right before the election?  The fiscal year starts in September, so that's usually the time of year when obstruction is the name of the game. The GOP doesn't want a fight this year due to the election -- but they also don't want to compromise.  Hmm.  And remember the showdown over raising the debt limit?  The supercommittee failed, so there are supposed to be automatic cuts across the boards in 2013.  But now there's buyer's remorse over an idiotic plan (called sequestration) that automatically makes deep cuts in defense and many federal programs.  The GOP wants to blame the Dems, but I seem to recall it was the GOP that wouldn't agree to raise the debt limit without these concessions.  You made this bed.

A report from the Congressional Budget Office says that the reason Social Security disability rolls are exploding is NOT the "slavery" Rep. Alan West alleges it is.  It's due to an aging population, a surge in women workers, changes in the law in the 1980s and a terrible economy in which disabled people can't find jobs.  Older recipients have increased; younger ones have decreased.  The job market is larger so there are more people eligible for disability.  It's not, as FOX News would have you believe, that President Obama is fostering dependence.  If you ask me, this is part of what happens when people don't have adequate access to health care.  They lose their jobs and end up on disability.  It would have been cheaper had we just given them health care.  But apparently that's more fostering dependence.  The only GOP solution seems to be to just stop giving everybody any kind of benefits.

Health insurance prices for women will drop with health reform in 2014, when insurers no longer can use gender as a basis for calculating premiums.

Best hospital in the United States?  Mass General.  I admit a bias -- my brother is the director of the Vascular Center there.  

If you've visited our website, you may have noticed our IVIg patient resource page.  IVIg -- intravenous immunoglobulin -- is used to treat immune deficiencies, as well as many rare diseases like myasthenia gravis and neuro-myelitis optica.  Well, here we go -- the expected study that shows that IVIg may stop the progression of Alzheimer's disease.  It is my unscientific belief that this is the medicine that addresses autoimmune diseases and I want it for my Crohn's.  Of course, since it's just starting to be studied for Crohn's, it will be a while before any insurance company will pay for it.  But this is miracle stuff, and every new use of it is exciting to me.  IVIg may play a bigger role in treating MS now that it's been determined that interferon beta is not working to stop the progression of that disease.

Abdominal obesity causes inflammation that contributes to heart disease, diabetes, and other chronic ailments.  I was okay with this article until it quoted an expert accusing the obese of sloth and gluttony.  It's a little more complicated than that.

A new, low volume colonoscopy prep.  I'm all for it.

That's it for now.  Have a great day.  Jennifer

Tuesday, July 17, 2012


How big is 50.7 million uninsured

 Very few will pay more under health reform, even with the individual mandate.

Are you getting a rebate from your insurer this year?

So you get subsidies through the exchanges.  If your state doesn't set up an exchange, the feds will run it for you.  And now the group of law professors who brought you years of litigation over the individual mandate say the statute doesn't let federal exchanges offer subsidies.   That's good, you ivory tower know nothings.  Keep coming up with ways for poor, sick people to be denied insurance.  After all, only rich people deserve health care, right?

Governors remain divided over Medicaid expansion.  Sure, because when someone comes to you offering you billions of dollars in exchange for providing health care to the poor, it's very suspicious. 

Children with disabilities are more likely to be abused.  So are adults.  Depends what you call abuse.

Older adults ignore prescription drug warning labels.

The first preventive med for HIV is approved.

US Preventive Medicine Task Force comes under fire.

You get cancer.  You're treated. All's clear.  And then you get a secondary cancer.  Myelodysplastic syndrome (MDS) is caused by chemotherapy and it's a killer.  When I did an emergency insurance appeal for coverage of an allogeneic stem cell transplant for MDS, I learned how devastating this illness can be. 

Chronic inflammation may be the key to many diseases, including cancer.

The FDA's lawyer approved spying on FDA employees.   All employers have the right to look at employees' work computers.  I'm not quite getting the big deal here -- except spying of any kind is creepy. 

Ever wonder why those TV doctors seem to know everything?   They don't. 

Three punks beat up a disabled man and post it on Facebook.  Really?  REALLY?

Finding out you have cancer.  I swear to god, it would be a relief.  No more fighting.  I'm so tired of fighting.

That's it.  Have a great day.  Jennifer

Monday, July 16, 2012

What I learned from Steven Covey

Imagine that this is a box cut into 4 quarters (I am incapable of making a horizonal line)

IMPORTANT                                IMPORTANT BUT NOT URGENT        
URGENT BUT NOT IMPORTANT                                URGENT
We spend way too much time on "urgent but not important," and nowhere near enough time on "important but not urgent."  That one shift in our day-to-day lives can bring us greater quality of life.

RIP Mr. Covey.  I am grateful to you for this important life lesson.   Jennifer

The Personal is Political

Several months ago, a nonprofit guru advised me to stop posting personal things on this blog.  I've taken that advice.  But sometimes the line between personal and political is fuzzy.

As you know, on May 20, when US Airways wouldn't let me take a change of clothing and personal hygiene items on a flight, another passenger said "maybe you shouldn't travel."  Sick people just shouldn't travel.

Last week, someone wrote in a memo that "unfortunate people," i.e., people with higher utilization needs -- sick people who need more health care services -- should be left on their own.  If they need better insurance than the norm, they should buy it.  If they need services not provided by insurance, they should pay for them out of their pockets. That's me.  "Unfortunate."

Today, a woman was angry at me because I could not find her a new apartment in Michigan.  Although I referred her to the local public housing authority, what she wanted was for me to tell her where to move.  In other words, she wanted me to be her real estate agent -- from half way across the country.

Most days, fewer than 50 people read this blog, according to Google analytics.  There are special days, like the day the health reform decision came down, when several hundred people tuned in.  But most days, it's not clear that waking up at 4 am to get this blog written before everybody wakes up matters very much.

So at least for today, this is my blog post.  I am exhausted.  I am hurt.  I am unhappy.  And I have to go to Denver on Friday and I don't know how I'm going to do it.  So excuse me for being personal, but I just don't have it in me to share today.  Hopefully, tomorrow will be better.  Jennifer

Friday, July 13, 2012

Friday Never Looked Better

Been through a lot this week.  About as tough as it gets.  Next week this time, I'll be on my way to Denver to speak to a group of patients with platelet disorders about health insurance.  Why do I say yes when I'm this tired?  Oh, well.  Here's the news:

I don't know why this is on the NY Times Health page this morning, but it's fabulous and you MUST watch the video.  If this doesn't cheer you up, I don't know what will.  

Although Governor Rick Scott of Florida says he's not going to expand the Medicaid program with federal dollars, he's getting push-back from consumer advocates and now hospitals, which made certain concessions in anticipation of having new patients with the ability to pay.  When providers and patients stick together on health reform implementation issues, we get good results, as we did in choosing the essential health benefits package here in Connecticut.  This is an alliance I hope we can continue.

Dr. Pauline Chen writes about two medical students who have written a book to explain the health care system and how it will change under health reform.  I already bought it (it's an e-book for $7.99 on Amazon) and will read it on my trip to Denver.  I'll let you know how it is. 

Curious about how exchanges will work?  Here's an interview with Kevin Counihan, CEO of Connecticut's Exchange, who explains some of the details.

Strangely, that's it!  Not a lot of new health news today.  Maybe that's a good thing - a little break once in awhile.  Anyway, have a great day and a great week-end!  Jennifer

Thursday, July 12, 2012

Beyond Exhaustion

A very tense couple of days as two advisory committees to the Connecticut Health Insurance Exchange come to terms on selecting an essential health benefits package.  It was very hard work in many ways, but I think we came to a fair recommendation that balances comprehensiveness with affordability

For me, this meant two nights in a row with only 4 hours' sleep, and the stress, especially yesterday, really hurt me physically.  I am feeling weak and shaky.  This old, broken body doesn't respond well to this kind of ordeal any more.  I sure do wish the week-end was here.

On to the news, though.

The House of Representatives voted to repeal the health reform law.   We knew this would happen and there it is.  The Senate will never pass it, and if they did, the President would veto it.  So this is just symbolic.  For a party that harps on President Obama for not doing enough to create jobs, they sure do spend a lot of time on political theater rather than trying to fix the economy.  Not to mention the fact that they don't have a plan to replace the health reform law, meaning we'd just go back to the way things were, without the hope that things will get better in 2014.  And not to mention the cost of spending so much time on trying to repeal a law that is helping people -- by some estimates, $50 million!

Here's an interesting opinion piece about how the House GOP is voting to repeal what they claim is a cut to Medicare (it's actually a cut to payments to Medicare Advantage Plans, private insurance companies) while voting for cuts to Medicare in every budget they've proposed in the past two years.  Irony.  Unfortunately, the irony doesn't change anything.

Contrary to what many people believe, most Medicaid patients who land in an emergency room do so for urgent care, not routine medical issues.  This is a good study to have.

Meanwhile, the anti-Medicaid poster child, Rick Perry, refuses to do anything to help the poor and the sick who would be helped by the federal dollars he's rejecting, but he's happy to spend millions to make repairs and upgrades to the Governor's mansion.  The height of hypocrisy. 

Doctors are now (finally) being taught about the cost of care and how that has to play into treatment decisions.  While we don't want them withholding care due to cost, we do have to recognize that there are unnecessary costs that we're all stuck with.  I have a case now in which a family was billed an additional $40,000 for a blood test that the doctor didn't order -- but the doctor ordered a panel, and this particular, expensive test is part of that panel.  So without realizing it, and without needing the test to be done, this doctor cost this family $40,000 for something they didn't even need.  There are ways that, if doctors are more conscious of cost, they can help without compromising care.

A tragic tale of what happens when doctors miss early signs of life-threatening infection -- sepsis -- taking a young boy's life in only three days.  It's easy to figure out what went wrong, but more importantly, how do we learn from this, avoid repeats.

Have you been to a doctor who has his/her own pharmacy in their office?  I've never seen this -- and apparently, it's a goldmine for them, as they price medications higher than the cost charged by pharmacies. 

Another installment from the NY Times blogger who had a bone marrow transplant, now wondering what it means to be a cancer survivor.  Poignant.

Jesse Jackson, Jr. is on leave from his Congressional post due to treatment of a "mood disorder."  His colleagues are pressing for more information, an explanation. If he was physically ill, would they be hassling him as much?  Or is this more of the way we Americans demonstrate a bias against mental health issues?

And that's it for today.  I hope you have a great day.  Jennifer

Wednesday, July 11, 2012


I have a lot to get done before a 9 am meeting at the Capitol this morning, so this will be really quick.

Today the House will vote to repeal health reform.  There.  I said it.  We might as well just report it and move on.  It's a symbolic step since the Senate won't agree and the President would veto it.  But the GOP, they would take away insurance from kids to age 26; they would eliminate external appeals; eliminate the medical loss ratio (those of you getting rebates, be forewarned); they would re-institute the Medicare doughnut hole in all its glory for seniors; they would re-institute lifetime and annual limits on benefits -- not to mention, they would make sure those of us with pre-existing conditions can't buy insurance -- EVER!  Really?  That's what you want to be known for in these tough times?

Here's their answer.  People with pre-existing conditions shouldn't have access to health care like healthy people do; instead, they should be put in high risk pools that cost twice as much as regular health insurance, provide lousy benefits, have lifetime limits -- and you have to go 6 months without insurance to be eligible.   "While I don't think that someone who is diagnosed with a massive tumor should the next day be able to have millions and millions and millions of dollars of health care provided, I do believe there can be a structure to deal with the issue of pre-existing conditions," Dreier said.  That's a direct quote.  Just so you know where you stand with the GOP.

Rick Perry upholds the right of Texans to the worst health care in the United States.  I didn't write that; WaPo did!  But they're right.  All of you in Texas best take note and make your voice heard if you care about healthcare.  Governor Perry will block the Medicaid expansion, deprive you of a marketplace where you can buy insurance intelligently, with all the facts, and continue to stiff the poor and needy.  Write him, call him, make your views known.  Same for you Floridians.  Indeed, we all must be vigilant.

In an essay coming out today in the Journal of the American Medical Association, bioethicists say that we have a moral obligation to buy health insurance.   If there was a tsunami on the way, would the government be allowed to force you to evacuate, take safety measures?  Well, the health care tsunami is on its way, and government needs to do what we can't or won't do on our own.

Will the insurance industry take steps to control waste and fraud?  According to the LA Times, not likely.  This is an interesting article, I think.  How do we reconcile concern that insurers are paying for things they shouldn't be with the competing concern that they are NOT paying for things they SHOULD be?  Hmmm.

President Obama has made federal health insurance available to seasonal firefighters.  I think this is great.

And that will have to be that for today.  I have very big fish to fry.  Wish me luck -- and have a great day!  Jennifer

Tuesday, July 10, 2012

Your Chance to Give Back

People ask me all the time what they can do to thank Advocacy for Patients for the free assistance we provide.  There are a few hundred of you who follow this blog, too, whom we hope are enriched by our posts.

Well, here's a chance to really help us out.  GreatNonprofits – a review site like Yelp or TripAdvisor – is conducting a campaign to identify the top-rated nonprofits in the US promoting social justice.

Won’t you help us participate in the awards by posting a review of your experience with us? All reviews will be visible to potential donors and volunteers. It’s easy and only takes 2 minutes! Go to http://www.greatnonprofits.org/reviews/write/advocacy-for-patients-with-chronic-illness-inc-1/campaign:social-justice-2012/ .  

It would mean a lot to us, raising our public profile in a big way, exposing us to donors who don't know we exist.  So please, take a minute or two today and support Advocacy for Patients, so we can continue to support you!  Jennifer


The Governor of Texas -- a guy who wanted to be President of the United States -- has said he will turn down the Medicaid expansion money and refuse to build an exchange -- a marketplace where Texas consumers could shop for and buy insurance.  Governors of South Carolina, Louisiana, Wisconsin, and Florida all say the same.  This is their way of protesting the Supreme Court decision, which they had counted on to relieve them of the billions of dollars the feds want to pump into their states to pay for health care for those who can't pay on their own, and to construct a marketplace where consumers could compare and buy insurance.  And, of course, they are protesting the fact that Barack Obama is President.  It would be awful for them, I suppose, if they implemented health reform and it actually did a lot of good.  So instead, they will refuse to implement it, leaving about four million poor people uninsured.  The feds will run their exchanges, so they aren't going to kill implementation of that part of the law.  They are just depriving the poor of health care.  For years, I've cringed when I've gotten calls from Texas and Florida -- there simply are no resources in those states.  Here was a chance for these governors to do the right thing with federal dollars.  I hope the residents of these states take notice.  This is nothing short of an outrage.

End of rant.

The GOP plans 5 hours of debate in the House before they vote to repeal health reform.   Don't worry -- it can't pass the Senate, and if it did, the President would veto it.  Political theater.  The five hours is to make sure each GOP member of the House has time to get a sound-bite on their local news back home.  But it sure is interesting to me that members of Congress would keep their federal employee health insurance if the law were repealed, whereas under the law, members of Congress and their staff will have to buy insurance on the Exchange.  Just in case they needed another reason to be against reform, now it's self-interest.  Nice.

Health reform will increase access to mental health services, bringing the mentally ill closer to parity with physical chronic illnesses.   I'm still concerned -- the mental health cases, eating disorders, substance abuse treatment -- insurance companies deny coverage and people stay sick or relapse because they were released to early.  And insurers respond by providing even less care.  Until someone actually enforces mental health parity, this is going to keep happening.

The Governor of Florida not only hates health reform -- he hates health care!  He closed the state's only tuberculosis hospital despite the largest TB outbreak in the United States.  It would be funny if it weren't for the fact that people will die as a result of his short-sightedness.

Wellpoint -- the parent corporation of the Anthem Blue Crosses -- is buying Amerigroup, which is a Medicaid managed care company.   This makes Wellpoint the largest Medicaid insurer in the United States.  You know there's a game here, right?  Poor people are notoriously high utilizers of health care.  They wouldn't be the population insurers would fight over -- except for the fact that there is no "medical loss ratio" (limit on the percentage of premium dollars that can be spent on administrative matters, including salaries and bonuses) in Medicaid, so insurers can profit big time.  In Connecticut, we proved that Medicaid managed care -- privatization, in other words -- costs way more than traditional fee for service Medicaid, so we've scrapped managed care right when many states are moving to a managed care model.  So Wellpoint sees an opportunity here.  Our tax dollars at work.

The campaign to put pain relief further out of the reach of people with chronic pain marches on.  Now, the FDA is requiring drug manufacturers to fund safety training for doctors who prescribe long-term narcotic use.  This will make it even harder to find a doctor willing to prescribe pain meds for chronic pain.  And it is an outrage. 

The US Preventive Services Task Force is recommending that weight loss programs be covered by insurance.  Finally.  Under health reform, insurers have to provide these recommended services for free -- no deductible or copay. 

More on how genetics may be changing the treatment of cancer.  This time, genetics helps to predict the course of cancer, eliminating guess-work in the prognosis.  Amazing advances that create the possibility that we are really headed towards a new kind of medicine.

Sitting less can extend your lifeSitting down for more than 3 hours per day can shave 2 years off of your life expectancy.

And there you go.  Have a great day!  Jennifer

Monday, July 9, 2012

Coping Conversations

I was interviewed by Dr. Bob Phillips for a radio show called Coping Conversations.  You can listen to the interview here.  Enjoy!  Jennifer

Monday Morning Memo

I hate Mondays as much as I love Fridays.  Oh, well.  Onward and upward.

The GOP-led House will vote to repeal health reform this week.  That means they would take your kids up to age 26 off of their parents' policies; they would reverse savings on prescription drugs for seniors; they would stop requiring insurers to spend 80-85 percent of premium dollars on health there, thereby reducing the amount premiums can be inflated for administrative costs, salaries, bonuses; they would stop requiring insurers to cover kids to age 19 with pre-existing conditions; they would eliminate the Pre-existing Condition Insurance Plan; they would reinstate lifetime and annual limits on benefits; they would eliminate external appeals. . . .  I could go on.  Of course, this is largely symbolic -- the Senate will not vote to repeal, and even if they did, the President would veto.  Enough political theater.  How about doing something to grow jobs.

As I've been saying since the Supreme Court decision, in states that opt out of the Medicaid expansion, there will be thousands of the very poor who are left with no health care.  This is so because subsidies start at 100% of federal poverty level, so those under 100% not only won't have Medicaid, but they won't be eligible for subsidies, so unless they are lucky enough to have employer-sponsored insurance, they will have nothing. 

Meanwhile, anti-reformers are preparing their next attack on the health reform law -- exchanges.  Well, subsidies, to be exact.  You see, the law says states create exchanges, marketplaces where people can shop for and buy insurance.  But if states don't create an exchange, the federal government will step in for them -- and the law doesn't expressly state that the subsidies are available through federally-run exchanges.  So the anti-reformers are developing a legal claim that, in fact, there are no subsidies in the federally-run exchanges.  And that would leave even more people out than opting out of the Medicaid expansion. 

Ask yourself why so many people don't want poor and middle-class people to be able to afford health care?

Since the Supreme Court decided that the penalty associated with the individual mandate should be considered a tax, anti-reformers have been screaming about the alleged tax increase on the middle class.  Turns out that, in fact, the biggest tax increase in the Affordable Care Act is the tax on Cadillac plans that starts in 2018

Meanwhile, if Republicans take a majority of the Senate, they are planning to repeal as much of health reform as they can through the budget reconciliation process -- the same process used to push through the law -- which requires a majority vote for passage rather than the usual 60 votes.   If you thought the Presidential election was the only key vote coming up for health reform, think again. But can they repeal parts of the law that don't deal with the budget, such as coverage of people with pre-existing conditions?  Hmmm.  Tom Daschle says the President must be re-elected for the ACA to survive.  It certainly would help if pro-reformers also held the Senate.  Mitch McConnell thinks the GOP has a 50/50 chance at winning a majorityBut even if the pro-reformers hold the Senate, there will be plenty a President Romney would be able to do to kill reform.

For those of you on disability, Allen West is here to tell you that it's a modern form of slavery.  That's right -- by fostering your dependence on Social Security disability, you are being robbed of your self-esteem and, thus, are being enslaved.  Is this kind of craziness even worth repeating?  For Mr. West to presume that your CHOICE to go on disability can be equated with the buying and selling of human beings into slavery -- wacko. 

The highest Medicare costs are those spent on a small percentage of challenging cases, often near the end of life. Often these are not the elderly; they are people under age 65 on disability.  How do we tackle the issue of health care costs without also tackling the moral issue of whether and when to withhold treatment?  Is this a decision we can make as a society, or do we just leave it to the patient and his/her family?

The current state of our knowledge about the risks and benefits of hormone therapy.  Whether to use it should be an individualized decision. 

New numbers in elder care -- in the past 3 months, 39.8 million people over age 15 assisted a person over age 65 due to a condition relating to age.  Most of them are middle-aged, caring for a parent, and 85% of them do not live in the same household as the elder.

New frontiers for cancer treatmentWhole genome sequencing.  It may provide us with new answers to treatment. 

Get this -- infants in households with dogs are less likely to get infections.  In general, they are healthier and need fewer antibiotics. 

And there you go, at least for this morning.  Have a great day!  Jennifer

Friday, July 6, 2012


And who doesn't love Fridays?!!!  Let's see what's going on in the world. 

Will states opt out of the Medicaid expansion?  The Supreme Court opened that door and now we anxiously wait to hear if anybody walks through it.  Really?  Leave the poorest of the poor without health care?  Even when it's 100% federally funded?  Why?  Really, give me one good reason.  According to the Agency for Health Care Research and Quality says Texas has the worst health care system in the country.  And yet Texas would turn down billions in federal dollars to improve health care for the poor in Texas?  Really? 

Meanwhile, the House is moving forward towards a vote to repeal the law.  Of course, this is symbolic political theater.  The Senate won't pass it and the President would veto it if they did. 

The Presidential campaigns are all about health care.  President Obama is running on his great accomplishment and the fact that it was the right thing to do, even if not politically popular.  Mitt Romney is trying to decide whether the mandate is a tax or not -- and having trouble distinguishing it from his Massachusetts mandate. Here's one voter who is grateful to the President for passing health reformHe says the law is here to stay, and I hope he's right.

Aetna and thousands of doctors in California are suing each other.

Is patient-driven care too much health care?  Patients demand tests, treatments -- are they getting more care than they need?  Some say yes.  I tend to want as little health care as I can possibly get away with.  I really don't understand wanting any more interaction with the medical community than is absolutely necessary.  And I think most patients who have been really sick are very glad to take breaks when they can.

The ever-wonderful Dr. Pauline Chen writes about nursing -- a hard job, physical labor, injuries -- and when nurses suffer, patients suffer.  As someone who has spent too much time in hospital beds, I can say that nurses make all the difference, one way or another. 

What a wonderful thing -- a program called No One Dies Alone.  That pretty much says it all.

I can't really imagine being without AC in over 100 degree heat.  The health risk alone is huge, not to mention comfort.  So it's no surprise that the elderly are turning up in droves at emergency rooms.  I have to say, the 9 days we went without power last October? I'd far prefer having it happen then than in this kind of heat.

That's it for this morning.  Have a great day and a great week-end!  Jennifer

Thursday, July 5, 2012

By Grace or Luck -- A Call To Compassion

I was on Fox News yesterday morning talking about how best to get people with pre-existing conditions insurance coverage.  You can watch it here.  I look horrendous, but I made the points I wanted to make, for the most part.

By the time I got back to my office, I had received the following email:

You have a pre-existing condition, yet you feel you should pay little or no more than anyone else for health coverage. How is it that YOU aren't a "cheap rider" at the expense of the rest of us who are, by the grace of God or simply by luck, healthy???? And what else do you feel entitled to, by the way?

Dave Lukasek
Bokeelia, FL

I posted this on my Facebook page and people -- all well-meaning, trying to make sure my feelings weren't hurt, mad because someone was so rude -- responded pretty much in kind, calling Dave all kinds of names, and wishing that he gets sick so he's forced to realize the heavy burden we bear -- not just in the form of health insurance premiums.  

And so it goes.  As long as we talk to each other like this, we get nowhere.  I guarantee you that Dave genuinely was offended by the things I said about needing a mandate to make sure that people who can afford health insurance but choose not to buy it are forced to pay their own way, if not by paying insurance premiums, then by paying a "tax" or penalty to the federal government, which spends billions of taxpayer dollars per year for uncompensated care -- care hospitals provide for which they never can collect payment.  And while I think it's short-sighted of him -- after all, he could have a heart attack or get into a car accident today and then he'd be the one needing insurance but not being able to get it -- and while I never said I should "pay little" for my health coverage, we need to know that pretty much half of America feels the way Dave does.

It's sort of ironic that Dave acknowledges that he is healthy "by the grace of God or simply by luck," while not realizing that by that same grace, that same luck, Dave's health can be taken away from him just as easily, and he can become the one who's struggling to pay premiums, deductibles, copays, coinsurance, and all the expenses of being sick that aren't covered by insurance.

According to Wikipedia, compassion is defined as  "the virtue of empathy for the suffering of others. It is regarded as a fundamental part of human love, and a cornerstone of greater social interconnection and humanism —foundational to the highest principles in philosophy, society, and personhood."  

Dave is lacking in compassion.  But so are we if we wish our misfortune on him -- or on anybody else.  When we let anger overcome us, we lose sight of our better nature, our capacity for compassion.  The response to Dave that I offer is compassion.  What happened to Dave to make him this angry, that he would lash out so hatefully to a complete stranger?  

All I know is that I don't want to hate Dave because that makes me just like Dave.  And as much as his email is incredibly offensive, I know it comes from something broken inside him and has nothing much to do with me.  

I kept thinking yesterday that it was ironic that this dialogue happened on July 4th, when we think about what makes America special.  Isn't it that we are a country based on compassion?  "Give me your tired, your poor, your huddled masses yearning to be free," right?  We are about civil rights.  We are about liberty, freedom, giving people a hand up when they're down.  We care for our poor and disabled through Social Security, Medicare, Medicaid, TANF, food stamps.  We support nonprofits that care for the homeless and the hungry and the sick.  We are special because we are founded on compassion.  It is deeply ingrained in us, in America.

It seems, though, that we have taken a wrong turn somewhere.  People like Dave are mad as hell, and scared, too.  They feel somehow that we who are sick, who advocate for an equal chance to live a decent life despite our misfortune, are asking too much.  And we who are sick, or who are advocates for others who are, think people who don't "get it" are not just wrong, misguided, uneducated, uninformed, short-sighted -- we think they are bad people.  They are not bad people.  They are lacking in compassion -- they cannot see that there but for grace or god or luck go we all.  When we respond to them so harshly, we, too, have lost our compassion.  

What I hear from Dave isn't offensive as much as it is sad.  What happened to Dave to make him incapable of compassion?  It must have been bad.  Maybe his business is going under.  Maybe he's losing his house.  I don't know what it is, but I know that Dave makes me sad, not angry.  

I say we embrace the Daves of the world.  First of all, meeting this level of vitriol with compassion would freak Dave out.  The last thing he expects from us is kindness.  Second, if we exercise compassion in the face of all the Daves, we keep from becoming Dave and that's really important.  Third, I do not choose to carry around that kind of anger.  I spent a good part of my life being really angry.  It takes a lot of energy.  And it's no fun.  Anger harms not only the targets of our anger, but also ourselves.  

Maybe -- just maybe -- if we respond with compassion, the Daves out there will be forced to see themselves in all their bitterness and realize that they are cheating themselves out of finding the good in people, the joy in life.  Maybe, by our example, Dave can find compassion in his heart, as well.

I don't know all the answers.  And I certainly am a deeply flawed human being who struggles to stay in touch with my compassion rather than my anger -- including anger at those who tell lies about health reform that feed people like Dave.  But I know that if I lash out at Dave, he gets the fight he was spoiling for, and that makes his day.  If, instead, I turn the other cheek, Dave will be caught off guard -- perhaps enough to force him to rethink things.  And even if my compassionate response doesn't do a thing to change what's in Dave's heart, it does keep my heart pure.

Because compassion truly is the highest principle.  It is a central component of love.  Without which we are all Daves.

Just a thought.  Jennifer