Monday, September 24, 2012

NY Times Article on Jennifer

We want to thank everyone for the kind and loving messages. Jennifer's impact was far greater than she ever knew. There was a touching article in the NY Times today which we wanted to share here, for all of our followers.

We greatly appreciate everyone's understanding and patience during this difficult time. The daily blog posts will have to be postponed, but check back for updates about Jennifer's memorial service.

Thank you!

Wednesday, September 19, 2012

Heavy Heart

It is with deep sorrow that we announce the untimely passing of Jennifer Jaff, Esq, Founder and Executive Director of Advocacy for Patients with Chronic Illness, Inc. Jennifer conceived of and founded Advocacy for Patients because of her extraordinary passion and commitment to ensuring equal rights for those living with chronic illness.  She dedicated her life and career to improving the quality of life for others based on her own experience with Crohn’s disease. 

Her advocacy on a personal level with individuals, in chronic illness arenas for larger disease populations, and in global forums for local and national health care reform was unparalleled in its sophistication, conviction, judiciousness, and honor. Jennifer believed fiercely that this cause was a civil rights issue, and her belief in the worth and rights of every individual with a chronic illness set precedents and models for equality nationwide.  Her goal to increase awareness of the need for and the power of advocacy for chronic illness touched all of us who knew her as well as the population at large. She always worked with amazing energy, grace, fortitude and resolve.

It was Jennifer’s aim to never refuse an opportunity to help someone in need and we know that there are many clients and companies with whom she was working at the time of her death. We appreciate the patience of our clients, friends and partners as the Advocacy for Patients staff works to contact those immediately affected by this tragic and unexpected loss and to develop plans for the future. 

We know that Jennifer will always be remembered for her dedication and the actions she took in the pursuit of justice for those with chronic illness.  Be assured that the Board of Directors and the Staff of Advocacy for Patients will do everything in our power to promote Jennifer’s great legacy.

We are informed by Jennifer’s family that any funeral arrangements will be private, but we are planning a memorial gathering for Jennifer in the next few months and we will announce the date, time and place once those details are final.  For those who want to donate gifts in her memory, please send them through our website, or by mail to Advocacy for Patients with Chronic Illness, Inc., 195 Farmington Avenue, Suite 306, Farmington, CT 06032.

Thank you.

Carol Fain Walters

Wednesday, September 12, 2012


I've waited all summer for a time when I could take a few days off.  There was always something in the way -- until now.  So I'm taking a couple of days off from blogging (and from life).  I'll be hunkered down with the most purrrrrfect Ms. Emily, a couple of good books, a few good movies, and nothing else.

But before I go, a bit of good news to leave off on -- the number of Americans without insurance has fallen to its lowest rate since 2008, all due to health reform, mostly due to coverage of people under age 26.  If only the American people will let this play out to 2014, things really are going to get better.  Here's the proof that it's already happening. 

Have a great week-end.  See ya Monday!  Jennifer

Hump Day Headlines

 The Institute of Medicine issued a report saying there's a TON of waste and opportunity for savings in the health care system.  The big recommendation is payment for quality outcomes rather than for each individual service.  We have to do something -- that much, we all agree on.

Indeed, health care costs nearly doubled for workers since 2002.  In what industry can you double your prices every 10 years without changing the product, or even cutting back on it?  And you don't think we have to do something to regulate insurance companies?  Indeed, increased rate regulation and tools like the medical loss ratio slowed the growth in premium prices to about 4% -- well below last year's increase and well below the decade's average of 8%.

Figures on the number of uninsured Americans should be released today.  The 2010 figures were right about 50 million.  Today will be the 2011 figures.  There should be a reduction, at least for the young Americans on their parents' policies to age 26.  We'll see.

One of the delivery system reforms in the health reform law is Accountable Care Organizations -- groups of hospitals, doctors, other providers to come together to provide complete care that is coordinated and patient-centered -- and, hopefully, saves money.  Previously, this was done as a pilot program, and the results will be published today.  The main finding is that Accountable Care Organizations save money.

Last week-end, Mitt Romney said he would keep the good parts of the health reform law, like coverage of people with pre-existing conditions.  However, apparently, this only applies to people who have not had a gap in coverage.  If you have had a gap, or if you've never had insurance, your option would be a high risk pool.  Twice as expensive, lifetime limits -- high risk pools are no answer for us.  Please, people.  Read and think for yourselves.

Fish oil pills don't prevent cancer.

The top 10 finalists in a scientific photography contest -- don't miss this.  These are stunningly beautiful. 

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

Tuesday, September 11, 2012

Tuesday Tidbits

The health reform law will make it easier for individuals to shop for, and compare, insurance.  That has touched off a wave of marketing as companies compete for markets they never aimed at before.

Mitt Romney is really struggling over health reform these days.  He wants to tack to the center, supporting things like coverage of pre-existing conditions, but the GOP base hates, with intense passion, anything to do with health reform.  Rick Santorum always said Romney was the worst possible person to go against President Obama on health reform because of Massachusetts -- but it may be true not only for that reason, but because Mitt Romney really isn't against every aspect of health reform.  But will he ever stand up to the right of his party?  When they got upset about his warming towards parts of the law, he immediately reaffirmed his vow to repeal health reform day one.  Meanwhile, former Obama health advisers issued a report that tells us what Romney/Ryan's Medicare plan would cost us -- and they now say they were being kind to Romney.  And then there's a new report from the Kaiser Family Foundation that also says it would cost seniors thousands.  It's fair to guess Governor Romney doesn't agree.

An Epidemic of Absence -- a new book on allergies and autoimmune diseases makes the case that getting rid of too much bacteria has weakened our immune systems.  I tend to buy this.  Why else is it that richer countries have higher incidence of Crohn's, MS, etc.?  Now, if only we could be cured by rolling around in the mud!

The US Preventive Service Task Force says testing for ovarian cancer is ineffective and generates too many false positives.  In fact, this isn't news -- the panel has been recommending against this test for years, as has the American Congress of Obstetricians and Gynecologists.  Hmm.

The government is beefing up suicide crisis lines for military and civilian.  Call  800-273-8255.  36,000 people die of suicide each year.  The goal is to save 20,000 of them. 

Every second counts when trying to open a blocked artery.  The technology is amazing, truly. 

Local health offices are going door to door, preaching better health.  Some say newsletters and dropping in isn't enough -- but isn't it better than nothing?

When children learn a musical instrument early on, they have long-term benefits, even years after they stop taking music lessons.

Steroids for children may stunt their growth.  This includes kids who use steroids for asthma.

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

Friday, September 7, 2012

NY Times Puzzle Solved!

Pseudochromhidrosis.  Read about it here.  And if anybody asks you why Smurfs are blue, the answer is pseudochromhidrosis!  Jennifer

Finally Friday!

Another really long, short week.  Got some work done, but we have a docket of insurance appeals right now as long as your arm.  Sort of intimidating.  Just have to take them one step at a time, like life in general.  Anyway, the news first.

Interestingly, most of the talk about health care at the two conventions came in the form of personal stories of people who've been up against the system.  It's deeply personal.  Does the deeply personal have a place in politics?  I believe the distinction between personal and political is a construct, not a real distinction.  Our policies are driven by our personal experience.  Stories are remarkably effective tools for changing minds.

$750 billion per year on medical waste. Administrative crapola, fraud, duplication of tests, avoidable errors -- it's huge, and we should be focusing right there when we start talking about health care costs.  The Institute of Medicine says our system needs a complete overhaul.  Can you imagine going to buy a car and not asking what it will cost?  Why not ask about labs, surgery, CT scans?

Our friend Nina Bernstein has written about long-term care and the cost of Medicaid for the elderly in nursing homes.  The more we prolong our lives, the more some of us will need nursing home care.  How to pay for it, though?  Medicaid isn't all about moms and kids.  And the cost of providing long-term care to the baby boomers is pretty daunting.

The great Dr. Pauline Chen writes about safety net hospitals.  You know -- the County hospitals that you avoid under all circumstances?  The assumption is that, because they're run down, the care is awful, but it's not true. 

An interesting essay by a woman who doesn't like the phrase "cancer survivor."  Neither do the members of her support group.  Maybe cancer "treatment" survivor, she says, but not "cancer survivor."  Different take -- interesting.

What happens when a Catholic hospital merges with a non-religious one?  The merged entity has to follow the Catholic Directives, which means not even offering counseling on birth control.  We're having a heck of a battle in Connecticut about one such merger.  Thanks to the Permanent Commission on the Status of Women's Teresa Younger for fighting the good fight on behalf of us all.

And that it.  Check back later to the answer to yesterday's NY Times puzzle.  And have a great day!  Jennifer

Thursday, September 6, 2012

Thursday Themes

It's NY Times puzzle day.  A 17 year old begins to turn blue.  What's the diagnosis?  I can hardly wait for tomorrow to find out!

About 800,000 more Americans ran out of food in 2011 than in 2010.  As many as 5.5% of Americans skipped a meal - or a day of meals - due to running out of food last year.  And the GOP wants to cut food stamps?  Really?

A judge in New York has stopped Medicaid cuts to home care from taking effect.  Budget woes are not a legal basis for depriving people of services to which they have a right.

CalPERS -- the California teacher retirement system -- saved $27 million by coordinating medical care in a teaming of Blue Shield, a hospital group, and a large physician's group.  This is really interesting.  One of the main ways people are suggesting we could save money would be through better care coordination to avoid duplicate tests, medication conflicts and consistent treatment plans.  And lo and behold, it works!

There are bits of DNA that, before now, scientists believed was junk.  But now it's been shown that these bits of matter serve a useful purpose in how cells and organs behave.

Sorry -- that's all I have for you this morning.  Unless you want to hear about Bill Clinton's speech.  So have a good day and expect another slow news morning tomorrow, unless you want to hear about President Obama's speech.  Jennifer

Wednesday, September 5, 2012

Hump Day Headlines

I'm loving the fact that it's Wednesday already, although I have a lot on my plate today.  So let's start with the news:

The President's team came out swinging on health reform last night.  That may turn people off, but I say it's about time the President took credit for doing something that's been tried and failed for generations.  I don't tell you who to vote for, but I will tell you that, if we get to 2014, we will be able to buy insurance.  If that matters a lot to you, as it does to me, there's only one vote possible.  As Stacy Lihn approached the podium with her little Zoey, whose life was saved because of health reform, she reminded us that A President Romney has pledged to repeal that law -- and that could mean death for her child.  What could possibly matter more?  The Dems have adopted the name Obamacare -- and I say Obamacare is care for 30 million Americans.  It's saving lives.  How is that a bad thing?  Only to those would say anything to beat President Obama, like the super-PAC, Americans for Prosperity, which says Obama care is like care in Canada.  But in Canada, the country runs health care and under Obamacare, it's still in the hands of private insurance companies.  When it comes to health care, the real question is whether Americans will buy whatever they're told or whether they'll actually think for themselves.

Maine decided to do something drastic to bring down insurance premiums.  They cut mandatory coverages to make it cheaper.  Not one new insurer entered the state, and while prices went down for individuals, they went up for groups -- with the highest increase for older Americans.

UnitedHealthcare issued a report showing huge differences in the cost of the same care under Medicare -- same patient population, same payer -- The only way this goes away is if Americans learn to comparison shop for care just as they do for other things.

Would you be healthier without email?  There was an experiment in which people went 5 days without email.  They were more productive, relaxed -- but when they were allowed to go back to email, they did.  I'd love 5 days without email.  In fact, I'll take 5 hours!

One-third of Americans have high blood pressure -- only half of them are treated.  Blood pressure meds are relatively inexpensive.  So why don't people get tested and treated?  Awful.

A new study shows that prolonged efforts at CPR may have value, and it's wrong to stop too soon.  An extra 9 minutes saves lives.

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

Tuesday, September 4, 2012

Tuesday Tidbits

Staying away from politics and conventions these days is easier said than done.  Thus, the short blog posts -- we're a nonprofit and while we do try to educate about health reform and Medicare, we try to stay out of electoral politics (although I do get into that stuff on my personal Facebook page if you're interested.

New diseases -- drug-resistant TB, a new tick-born heartland virusFarm use of antibiotics defies scrutiny Standford scientists question advantages of organic meat and veggies.  Relief of asthma at a priceUse of inhalers may affect growth.  Does any of that make any sense at all?

Trying a new line of attack in heart disease -- attacking inflammation.   This fascinates me.  Think of all of the inflammatory illnesses  -- and then think of a single cause.  Wouldn't that be something?

HHS has stated that it will not tolerate health discrimination in health care against transgendered.

A new program teaches doctors to treat addiction.

Kids with autism are bullies more than other kids.  As a fat kid, I sort of doubt kids with autism are bullied more than fat kids or Downs kids or any kids who are different.  But it all sucks.  Peter Paul & Mary's song Don't Laugh at Me comes to mind.

A rare infection prompts neti-pot warning.  Think twice, folks. 

That's it.  Have a great day.  Jennifer

Friday, August 31, 2012

Finally Friday

Ahhhh.  A three-day week-end, and much needed.  But first, the news:

Paul Krugman on Ryan's Medicare plan.I'm not saying a word -- just read it.  And here's Ezra Klein on Ryan's claim that the health reform law is a "new entitlement we didn't even ask for."  Actually, President Obama promised it, we elected him, and so yeah, a whole lot of us did ask for it -- and it's not an entitlement program, either.  It's just a different way of buying health insurance.  And here's a Q & A on both parties' plans for Medicare.

50 million people are uninsured.  The state with the largest number of uninsureds is . . . TEXAS! I could have told you that.  I think we get more calls from Texas than anywhere else in the country. 

So the California Medical Association and some other providers sue Aetna because Aetna allegedly threatens patients who want to see out of network doctors.  Then Aetna refuses to negotiate rates with these doctors, saying it's sort of hard to negotiate with people who are suing you.  Meanwhile, patients are stuck in the middle and may even have to change doctors if Aetna and their doctors don't come to agreement on reimbursement rates.  These disputes are happening more and more. 

California Medicaid (called Medi-Cal) has a pilot program called Partners for Children, through which a child with a life-threatening illness is paired up with a liaison to manage medical care and insurance, and an assigned nurse available 24/7.  How wonderful.  Not only does it help the child and her family, but it also saves money.  This is what insurers need to do more of.

A gripping tale of what it's like to do heart transplants on children. Sometimes, when I'm working on a health insurance appeal that's life and death, I feel incredible pressure.  But I never actually have a person's heart in my hands.  The teams who do transplants -- especially on children -- are amazing.

The FDA approved a drug to ease constipation and irritable bowel syndrome.  So many people suffer from these ailments -- I hope this drug lives up to its promise.

Senators Blumenthal and Gillibrand held a hearing in Connecticut on Lyme disease yesterday.  Such a hard issue.  The published studies don't bear out the patients' clinical experience, and yet these patients clearly are sick.  But getting insurance to cover treatment exceeding 30 days of antibiotics  is nearly impossible.

And that's it for today.  Have a great day and a great week-end!  Jennifer

Thursday, August 30, 2012

Thursday Themes

Hurricane Isaac is battering the coast of Louisiana.  These folks have lived through Katrina.  I can only imagine what it must feel like to watch the waters rise again and know that there is nothing you can do -- until it's over, and then you face cleaning up, again.  I'm very sad for them.

The US tops France, Germany and the UK in potentially preventable deaths.  The lack of timely health care is the cause of this.  Yet more proof of the need for universal coverage.

President Obama and VP candidate Paul Ryan have very similar goals when it comes to controlling Medicare spending, but they would get there in very different ways.  You really should read this.  It's a clear choice between a voucher to help you buy health insurance, after which you're on your own, versus making cuts to reimbursement rates, more fraud investigations, eliminating waste, and so on.  Paul Ryan's speech last night also talked about health care, his determination to repeal health reform (leaving people with pre-existing conditions without insurance) -- here's a run down of what he said about health care and what he didn't.

Another installment from the NY Times blogger who's been going through a bone marrow transplant.  She's now undergoing chemotherapy.  This young woman's courage is remarkable.

Calorie limits might not extend your life, but you might be healthier, says a new study.  I'm sort of confused -- how does being healthier NOT extend your life?  Oh, well -- bottom line is that less is more when it comes to calories, at least for most of us.

In California, if you're on Medi-Cal (Medicaid in California), and if you want to keep attending adult day centers, you have to enroll in managed care.  This is sort of a "money or your life" proposition, if you ask me.

The number of West Nile cases is increasing.  This makes me nervous.  Especially for those of us with suppressed immune systems, if you start feeling sick, don't wait before seeking medical attention.

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

Wednesday, August 29, 2012

Hump Day Headlines

Sorry, but I'm constitutionally incapable of watching the GOP convention without having a major cardiac event.  I probably won't watch much of the Dem convention, either.  The truth is that, for me, politics is an end to a means -- we need the right people in office who won't repeal health reform so we get coverage of pre-existing conditions.  And there's good reason to believe that the GOP will cut Medicare and Medicaid if given the changeHere's Politico's take on Paul Ryan's health care plans.  So sure, there are other reasons to vote or not vote for many people, but I'm a single-issue voter.  So don't expect much coverage of the conventions here.  Still, there's lots of other news (believe it or not).

Although you may question whether it's health-related, but hurricane Isaac is touching down pretty darn close to where Katrina hit.  I am so very sorry for the people who now have to go through this -- twice.  A storm surge has already surpassed one of the levees.  I can't imagine having to live through something like this twice.  Or even once.  Just awful. 

The health reform law broadens preventive care for women more than men. For example, there's free preventive care for women, including tubal ligation, but not for vasectomies.  STD testing also is for women and not men, which makes no sense whatsoever.  The justification is that women go to the doctor more -- at least annually for the gynecological exam -- and they tend to be the partner who focuses on STDs and contraception.

Many states are slashing Medicaid, including dental services for adults.  We all don't pay enough attention to oral health.  Meanwhile, when something goes wrong, it costs a mint.  If I didn't have a savings account, I would be walking around with empty holes in my mouth!  We should not see dental care as expendable.

A Medicare Advantage plan -- a private HMO that administers Medicare for people enrolled in the plan -- has been found to have bilked Medicare of millions.  SCAN Health agreed to pay $3.8 million for billing people with higher risk scores so they would get more reimbursement for them.  

Hundreds of families turned up at a free health fair in South LA last week-end.  Kids got the back-to-school immunizations -- a great event.

The American Academy of Pediatrics has come out in favor of circumcision.  They say the benefits far outweigh the risks of the procedure.

A federal court said the government can't force cigarette makers to post graphic photos on their packs to warn people of the harm of smoking.  It would violate the free speech rights of the cigarette makers.  Ugh.

The New York Attorney General is investigating energy drinks -- what's in them, do they really do as advertised?  These drinks are regulated less than soda, and there's concern about what's in them and how safe they really are.  Do you drink this stuff? 

The Gordon and Betty Moore Foundation is giving $500,000 to hospitals to try to stem the tide of hospital acquired infections.  On their list of things to avoid?  A loss of dignity.  Somebody in that family has been in the hospital and gets it.

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

Tuesday, August 28, 2012

Better Late Than Never

I made the mistake of taking yesterday off and returned to piles and piles -- hard to imagine how much could happen in one day.  So I'm off to a slow start today after having listened to voicemails and dealing with the mail, writing checks,etc.  So this will be a quickie today.

Is it a sign that there's a hurricane disrupting the GOP convention?  I'm not big on signs, but it must be terribly disappointing -- not to mention hard to change plane flights, hotels, network coverage -- what a mess.  It looks like Isaac will hit today right about where Katrina hit -- and that is a horrible tragedy, a region that hasn't yet been repaired and replenished yet, to take another hit -- I don't know how people will manage -- it's just too much.

More isn't always better.  Over-treatment is taking a huge toll.  What will that additional test tell you?  What would you do if it came back positive?  If the answer is nothing, then do you really need the test?  It's so hard to say no to a doctor -- they feel that you're questioning their authority.  But must we say yes to absolutely anything?

Early antibiotics may result in obesity.  Hmmm.  That could explain something in my family, for sure.

It started with a rash -- poison ivy, he thought.  But it blistered and spread to his face.  Super-potent medications like CellCept had no effect.  Skin biopsies said psoriasis, but the treatment didn't work.  It turned out to be a pancreatic tumor.  So too many tests are wasteful (see above), but not enough tests might have missed this rare diagnosis.  What's a patient to do?

Gotta go do a school conference.  Will try go get back here to finish later.  Sorry.  J

Friday, August 24, 2012

Finally Friday!

I'm particularly excited because I'm taking Monday off -- I'll have two 3-day week-ends in a row!  YAY!  But first, the news.

Should Lance Armstrong have given up his fight to prove that he wasn't doping?  He'll be stripped of all titles, medals, even prize money.  I want to believe that he's given up because the process was flawed, and not because he knew the evidence against him was overwhelming.  He's been an inspiration to many patients.  I read one opinion piece saying he'd have kept fighting if he was really innocent.  Very sad, either way.

A man walks into a hospital and puts a gun to his ailing wife's head and pulls the trigger.  Murder -- or mercy killing?  If it was a mercy killing, then I'm very sorry this man will spend the rest of his life in prison.  Married for 48 years, I can easily see how he thought he was doing the right thing, out of love.  What do you think?

The ever-wonderful Dr. Pauline Chen writes about doctor burn-out.  I get complaints all the time from patients whose doctors can't be bothered taking their inexplicable complaints seriously. I wonder if any of that has to do with the doctor's mental and physical status rather than simply not caring.  Burn-out affects primary care providers more than specialists -- doctors on the front lines, bombarded by demands on their time.  When they're burned out, they make mistakes, become detached, lose sight of why they wanted to be a doctor in the first place.  But what I want to know is what's a patient to do?

There was an outbreak of a deadly bug at the NIH hospital.  Six people died.  Eventually, the NIH figured out what it was and where it came from -- but while people were getting sick and dying, they didn't tell anybody.  Other patients in the hospital were exposed without their knowledge.  I think that's outrageous.

With the rise of West Nile virus, you should know what signs to look for.  Here's the low down.

Tattoo ink can be hazardous to your health.  Apparently, tattoo ink isn't required to be sterile, and several people have come down with nasty infections from it.  So if you're going to get inked, make sure it's in a shop that takes sterility seriously.

And that's it for this Friday morning.  Have a great day and a great week-end.  Jennifer

Thursday, August 23, 2012

Thursday Themes

In the midst of the election season, the non-partisan Congressional Budget Office reports that if we don't do something to avoid the expiration of the Bush tax cuts and the automatic budget cuts that were put in place during the fight over raising the debt ceiling, we are headed towards a serious recession.  There's no chance Congress will reach an agreement on any of this, at least until after the election.  That means riding this wave of uncertainty right down to the last minute.

The campaigns have been talking non-stop about Medicare, but Ezra Klein reminds us that the big Romney-Ryan cuts are to programs for the poor, starting with Medicaid, food stamps, Pell grants -- and on and on.  It's a very fundamental disagreement about the role of government.  Since World War II, with the GI Bill and first time home-buyer supports and other programs, we built a middle class, later propping it up with Social Security, Medicaid and Medicare.  There was, in essence, a social compact, an agreement into which Americans entered to ensure that every American had an opportunity to grow and succeed.  The push towards small government doesn't help the middle class; it helps the wealthy.  And yet, so many middle class Americans favor the small government model.  It's completely baffling, if you ask me.

"Black and Latino children were more likely than white children to be obese, witness gun violence and ride in a car without a seat belt, according to a study released Wednesday."  There are widespread disparities in health status in African-American, Latino and white fifth graders in Houston, Birmingham, Alabama, and Los Angeles across many health indicators, from cigarette smoking to bike helmet use.  Many of these disparities increase the risk of health problems like diabetes and heart disease.

Here in Connecticut, Anthem Blue Cross Blue Shield, Aetna, and ConnectiCare have all submitted premium rate filings that would result in more than a 13% hike in premiums next year.  Consumers who would be affected by the rate hikes have an opportunity to comment.  I know we did.

We're seeing an alarming number of cases of West Nile virus this year.  With mosquito control district budgets being cut, we aren't really ready for this. 

Six ways to cope with cancer, from the NY Times blogger who's been writing throughout her bone marrow transplant.

A British man who had "locked-in syndrome" after a stroke, and who went to court for the right to assisted suicide, has died.  The court ruled against him and he refused to eat after that.  So sad. 

Children of older fathers appear to be more prone to autism, schizophrenia, as they transmit more DNA variations to their children.  Is this the male version of the biological clock?  Maybe.

Pulling an all-nighter to study for an exam is counter-productive since sleep deprivation greatly compromises comprehension and performance.  Go to bed!

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

Wednesday, August 22, 2012

Hump Day Headlines

More on the dueling Medicare fixes.  Today's report is that Romney's proposal to restore the $716 billion he claims President Obama "robbed" from Medicare would actually hasten Medicare's insolvency.  Of course, there's also the fact that Ryan's plan would have cut the same amount from Medicare, but instead of putting the savings toward providing health insurance for middle-income Americans, he would apply it to the deficit.  And the fact that Romney's proposal would cost seniors hundreds of additional dollars now, undermining his claim that his plan doesn't affect current seniors.  Experts cited by the NY Times such as John McDonough, the director of the Center for Public Health Leadership at Harvard, say either Romney/Ryan don't understand Medicare or they're deliberately not being candid with the American people.  I suspect we are going to be hit over the head on this issue pretty consistently between now and November.

A federal court of appeals has allowed Texas to cut off funding for Planned Parenthood as part of the Women's Health Program.  Planned Parenthood did not perform abortions as part of that Program.  Instead, they provided cancer screenings and other women's health services.

How do we control health care spending without rationing?  We hate that word, "rationing."  But we already provide more health care to those with insurance than those without, more to those who can afford it than those who can't.  And if you think insurance companies making decisions about what to cover isn't rationing, you're very wrong.  How can we reduce spending without inequity?  That, says this writer, is the question.

Montana's Senator Jon Tester has introduced legislation that would give states authority to review and block rate increases.  Some states already have such laws, but they aren't always applied vigorously.  Other states don't have such laws at all.  It's a very important idea whose time has come, as insurers keep raising rates as if there is no end to what they can charge.  Especially in states with limited competition because of the small number of insurers in the state, this is so important.  I knew there was a reason Pearl Jam is playing a concert for Senator Tester! 

The new Alzheimer's caregivers: men. Really, it's not just Alzheimer's, and there's nothing new about this.  My dad certainly was my mom's caregiver at the end of her life.  But we think of caregivers as women.  It's good to be reminded that they're men, too.

A few years of music lessons improves mental functioning, even years after you've stopped the lessons.  Yet another reason your kids should learn an instrument.

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

Tuesday, August 21, 2012

White House Disability Call on Friday

White House Monthly Disability Call

Hello everyone,

In order to help keep you more informed, we host monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the Federal government. This month’s call will feature Senior Advisor to President Obama, Valerie Jarrett, and Director of the White House Domestic Policy Council, Cecilia Muñoz. Both will also take questions.

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit our website at and fill out the "contact us" form in the disabilities section, or you can email us at and provide your full name, city, state, and organization.

We strongly urge and ask that you distribute this email broadly to your networks and listservs so that everyone has the opportunity to learn this valuable information.

I would encourage you to call in about five minutes early due to the large volume of callers.
The conference call information is below.
  • Date of Call: Friday, August 24, 2012
  • Start Time: 2:00 p.m. EDT (dial in 5 minutes early)
  • Dial in: (800) 762-7308  
  • Code: White House Disability Call
For live captioning, at the start time of the event, please login by clicking on the link below. Please only use this feature if you are deaf or hard of hearing.

This call is off the record and not for press purposes. 

Tuesday Tidbits

The LA Times's David Lazarus says disabled people would be hurt most by the Ryan plan.  Shifting Medicare to vouchers would cost the disabled and elderly more.  For the disabled, this is especially hard because they have chronic health care problems that require ongoing care, and Social Security disability may be their only source of income.

The health reform law invested heavily in finding and eliminating Medicare fraud.  This is so right -- cutting fraud and waste are the best ways to cut savings without in any way affecting patient care.

Do you know how to choose a health plan?  Neither do most employees.  Come open enrollment time and they're confused and don't know how to make decisions.   Too bad this article doesn't have a sidebar that provides some guidance in choosing a plan.

Aetna's merger with Maryland-based Coventry reflects a change in the health insurance landscape, where bigger is better and money is to be made from privatization of Medicaid, Medicare and those poor enough to get government subsidies to buy insurance in an Exchange.

The US Preventive Services Task Force is poised to make HIV testing part of standard medical practice.  This is the body that, under health reform, decides what services should be provided for free (no deductibles, copays, coinsurance).  Why shouldn't HIV testing be standard?

Hospitals rate insurers as payers -- Wellpoint (Anthem) is their least favorite, whereas Cigna is their top choice.  Interesting to see how the consumer experience compares to that of hospitals.

More evidence of a rise in tuberculosis -- this time, in California, where there's a specialized ward to treat tuberculosis patients.

An interesting case against an ER doctor in California who used very aggressive collection efforts to try to get paid.  When she didn't like what the insurance company paid, she returned the payment and sued the patients, including attempting to take their homes.  California law requires doctors to accept managed care payments as payment in full for ER visits, but this doctor claims that the patients she's going after didn't have true emergencies.  Now, the state is suing the doctor, who has been ordered to stop these collection tactics.

Nearly half of all doctors report symptoms of burnout.  You know, I have to say that it seems to me that nearly half of all people report symptoms of burnout.  Not to take anything away from doctors, but I think we all struggle with this.  I know I do.

Planned Parenthood is dedicating $3 million to a breast health initiative.  About $1 million will go towards better diagnostic equipment, and the rest will go to outreach in underserved populations.

So you have life-saving heart surgery as a child.  Now you're an adult, and the fix is breaking down.  Another surgery?   What were thought to be cures don't last a lifetime.  And the doctors who really understand congenital heart problems are pediatricians - so where do these adult patients belong?  As medicine helps us keep people living longer, we face these sorts of quandries.

How well you sleep may hinge on your race?  Really?  Apparently.  Non-Latino whites tend to sleep best, with African-Americans sleeping worst.  Hmmm. 

Vitamin D may help ward off the common cold.  I take loads of prescription-strength vitamin D -- my gastroenterologist believes it helps IBD and it's helped me tremendously. 

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

Monday, August 20, 2012

I Really Hate Mondays

I didn't mind working until 9 pm on Friday because I knew I had the next two days off.  And when I say off, I mean really off -- pretty much spending my time resting, sleeping, watching mediocre TV that I've recorded over the past week(s), doing nothing more than checking email twice a day and going grocery shopping.  It feels so good to be able to stay in bed as long as I want to.  But then comes Monday, and although I'm running later than usual, were it up to me, I'd still be in bed, sleeping.  Unfortunately, I told several people to call me on Monday -- people who really need help, including one who really needs help quickly.  And so my conscience would not allow me to sleep in any later than I did.  And here I am, my first blog post for the week, but really, I'd love nothing more than to go back to bed.  WAKE UP! I attempt to command myself, but the pull to be prone is so strong.  Maybe the news will get my juices flowing.

Poverty in America brings with it a plague of what are called neglected tropical diseases -- dengue fever, cysticerosis, murine typhus and more.  These are diseases we expect to see in what we call developing countries.  But in the US, 2.8 million children live in households with income of less than $2 per person per day.  Poverty rates in Gulf Coast states of Mississippi, Louisiana and Alabama are as high as 20 percent.  In America, the richest country in the world.  We should be ashamed.  Sadly, only some of us are.

The Presidential campaigns won't talk about that, though.  Instead, Romney/Ryan will continue to accuse President Obama of raiding Medicare to fund health reform when, in fact (1) health reform does not reduce Medicare benefits -- it uses savings from lowering reimbursement rates for Medicare Advantage plans, private HMOs making a profit on Medicare, and slows the rate of growth of provider reimbursement; and (2) Ryan's budget would take the exact same amount of money from Medicare and use it to pay down the budget deficitRomney/Ryan are focusing on the fact that their plan would not affect anybody over age 55, so seniors needn't worry.  Meanwhile, the Obama campaign focuses on the savings seniors already have felt with the phase-out of the prescription drug doughnut hole.  Want the facts?  Try this piece from the non-partisan Kaiser Health News.

Maryland hospitals are looking to re-balance income, lowering prices for Medicare and Medicaid and raising prices for commercial insurance.  Apparently, Medicare and Medicaid pay more in Maryland than in most states, and private insurance pays less, so the hospitals are looking at correcting that trend.

Apps that play doctor?  Coming soon, apps you will be able to download to track things like blood glucose and heart rate.  The idea is that doctors will prescribe them and insurance companies will foot the bill.  Please don't ask me to appeal for you when your insurer denies coverage.  We're a long way from insurance covering an app.  But the FDA actually already approved one as a medical device, so maybe we're not as far from that as I would have thought.

If you have a defibrillator implanted, you need to check with your doctor about the brand and make sure it's not part of a recall of devices made by St. Jude's Medical that appear to be defectiveThe FDA wants doctors to start x-raying patients to check their leads -- we're talking 80,000 patients -- but they won't necessarily do anything for patients with the defective leads except keep close watch on them.  Sounds like a mess to me -- but you should check with your doctor for more information.

A USA gold-medal soccer player comes out with her story of living with lupus -- and her goal of finding a cure for the disease.

And that's it for this Monday morning.  I'm no closer to being happy it's Monday, but I am wide awake now and ready to tackle the day.  Have a great one!  Jennifer

Friday, August 17, 2012

A Mom's Message to her Child

Carla Valentino suffers from RSD/CRPS (Reflex Sympathetic Dystrophy/ Chronic Regional Pain Syndrome), but that doesn’t define her. Instead, if you were to ask Carla what her proudest label is, she’d say “mom”.

In an effort to explain her condition to her own daughter, Valentino embarked on a journey to write a book specifically for children, on how to understand and cope with illness. When Can We Run, Dance, and Play Again is a colorful, touching and informative children’s story for kids of parents who are suffering from illness.

Valentino aims at presenting children with an illustration on how families deal with health issues, how to strengthen the family bond and how to use their imaginations.

For more on Valentino’s story, or for information on her book, visit her blog at

I, for one, can't wait to read it myself!  Jennifer

Finally Friday!

More truth-telling on Medicare.  The health reform law does not cut benefits; the Ryan plan converts the whole program into a voucher system.  Which is better?  Here's one opinion, and here's the President's response to the claim that he "stole" $700 billion from Medicare and here's more about the Romney/Ryan position -- but in the end, you have to decide for yourself.  And here's more on Ryan's plan for Medicaid, which is even more dramatic.  You know, folks, the politicians are counting on you not doing your homework and buying whatever they're saying -- and I mean this about both sides of the aisle.  The only reasonable response for us voters is to take responsibility for learning the truth.  So you don't have to read me, but you do have to read and question and not just accept any one source.  Learn and think for yourself.  If, in fact, Medicare is even more important to voters than health reform, then you owe it to yourself to try to make sure you have the facts straight.

How to control health care costs -- set spending caps?  Some think so, and this scares me.  What happens to people who really need more than the average amount of care -- hemophiliacs, transplant patients?  We have to do something, but is this the best way to go? 

Dr. Pauline Chen writes this week about the problem we all have with these short doctor visits in which they tell us 10 things and maybe we remember one or two.  Should doctors focus more narrowly?  Should they give us a checklist in writing?  Always thoughtful, Dr. Chen gives us the doctor's perspective.

Imagine working in an ER in Aurora, Colorado on the night of the horrific shooting.  Here's what it was like -- and what it's like to live with the memories.

We're seeing an outbreak of West Nile Virus around Dallas.  They're now spraying pesticide to try to kill off the mosquitos.  Be careful, folks. 

The CDC says we should all be tested for hepatitis C.  Have you been tested?  If not, check with your doctor at your next visit.

Ann Romney talks about having MS on the campaign trail and not being able to keep up the crazy-fast pace.  Something all of us with chronic illnesses have to be mindful of.

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

Thursday, August 16, 2012

Truth to Power

A lot of people are saying these days that President Obama took $716 billion from Medicare and used it to fund "Obamacare."  This is a lie.  President Obama cut payments to Medicare Advantage Plans -- private HMOs that administer Medicare -- because it was shown that the private insurers who run Medicare Advantage plans were making an unseemly profit on the system.  There was no reduction in the mandatory benefits that came with that.  President Obama also has tried to reduce inefficiencies and waste -- so they are cutting payments to hospitals with unacceptable readmission rates and they have stepped up fraud investigations.  In addition, President Obama has initiated a plan to coordinate the care of people who are on both Medicare and Medicaid, which will save some of the expense associated with these most expensive beneficiaries.  President Obama also included in the health reform law the phase-out of the Medicare Part D (drugs) doughnut hole, which already has saved seniors a bundle.  In fact, the changes President Obama has made to Medicare extended the life of the Medicare program.  You don't have to agree with me on health reform or on President Obama, but at least let the critique be truthful. 

Another installment from the NY Times blogger and cancer patient who's been undergoing a bone marrow transplant.  This time, she talks about how to talk about being sick -- something I best most of us with chronic illnesses have thought a lot about.

Clostridium difficile -- affectionately known as c diff -- is a nasty infection that causes diarrhea, abdominal pain and bloating.  It shows up in hospitals a lot, although I've had it many times when I've had to take antibiotics.  What's news is that it kills about 30,000 Americans each year.  More can be done to stop it -- it's not even complicated if we just make it a priority.

A new AARP ad is reaching out to caregivers, acknowledging their burden and trying to provide them with some support.  This is so important -- we get so many calls from people who are calling on behalf of a child, a spouse, a parent, a sibling, trying to juggle caregiving with the rest of their many burdens.

Hundreds of thousands of Afghan veterans are suffering from a degenerative brain disease that has no known cause or cure.  It can cause angry outbursts, memory loss, problems walking and speaking, paranoia, and even suicide.  These may be invisible wounds that plague soldiers long after they return home. 

The entertainment industry is starting to portray mental illness in a more positive light as it makes its way into the lives of television characters.  It's no longer just the crazed gunman; it's Tony Soprano in therapy, Monk's OCD.  But there's still a long way to go.

And on that note, I bid you a great day!  Jennifer

Wednesday, August 15, 2012

Is This the Kind of World We Want?

We're working with a family with two boys with Duchenne muscular dystrophy (DMD).  One boy is enrolled in a clinical trial for a drug called eteplirsen, manufactured by a company called Sarepta Therapeutics and he's doing great.  However, the other boy is non-ambulatory, so he's not qualified for the clinical trial, and he continues to decline.  We've spoken to the drug company about a single-use IND, which the FDA gives for investigational drugs on a one-time basis.  However, they say they don't have enough of the drug available, and they have a lot of other families who want the drug.  The family is torn apart, happy about how one child is doing but devastated as they watch his brother decline knowing there's a drug out there that could help but the drug company won't allow it.  What a world we live in, where parents have to watch a child fade despite the fact that there's a ready solution.  You can read more about this family's courageous struggle here

In this world, hospitals find ways to profit for the private equity firms that bankroll them, even if it means bilking Medicare of millions of dollars, without regard for what's best for patients.  In this world, we have to keep fighting for health care for seniors -- a fight that should have ended decades ago.  In this world, political battles are fought with lies that do nothing but scare the American people.  Somehow, it's become completely okay to flat-out lie to the American people -- for example, this ad accuses the Independent Payment Advisory Board of rationing health care when, every single day, insurance companies already decide what care you're allowed to have. 

In this world, too many of us question our moral obligation to care for the very poor.  But we can't even have a civilized discussion about what kind of society we want to be -- it all just unravels into name-calling and baseless attacks.  Meanwhile, people suffer terribly -- children, who are poor through no fault of their own, who we abandon in the name of cutting budgets.

We need to have a serious discussion here in America.  People are hurting.  What obligation do the "haves" have to the "have nots?"  Is it fair to tax people who earn more at a higher rate?  Is it right to make sure everybody has access to health care, no matter their circumstances?  Are we willing to make sacrifices for the good of us all?  Or is it every man, woman and child for themselves?  You know my answer -- I'm willing to sacrifice my own interests for those of others.  It would be impossible to listen to the tales of loss and fear and illness that I hear every day and not be prepared to do whatever I can to help.  Is it just that those who are out for themselves don't have the same exposure to the tragedies that lurk in the shadows of America?  Because if that's the issue, I invite them to come sit in my chair for a day and see how they feel about the virtue of selfishness after that.  Jennifer