Wednesday, November 30, 2011

'Tis the Season

Dear Friends:

As you know, Advocacy for Patients provides FREE help to people with chronic illnesses nationwide. Whether it's a health or disability insurance appeal, an employment discrimination matter, a kid whose school isn't helping them battle through a bout of illness -- really anything related to chronic illness -- we work for free. It just feels wrong to charge someone in crisis; if we charged, many of the people who need our services would have nowhere to go. So providing services for free is a basic piece of our work ethic.

People ask me all the time how we get our funding. It's true that we do get a few small grants, but they are small, and they tend to fund special projects rather than our ongoing work. The people who fund our day-to-day work are clients, families, friends. We run on the $50 and $100 checks people write to us. Really.

This year, we had to hire a second lawyer to keep up with demand, and then we had to move into commercial office space because we ran out of room in my house. That means we're over budget and under income. It also means that we have to raise a lot more next year than ever before.

If you read this blog every day, if you've used our services, if you've recommended us to a friend or family member, or if you just plain like what we do, please take a moment and show your support today. Even if you can only give $10, it will help more than you know. You can donate through PayPal from our website, here. Or you can send a check to Advocacy for Patients, 195 Farmington Avenue, Suite 306, Farmington, CT 06032.

I don't post major public requests for support very often. The fact that I'm doing now is not out of choice; it's out of necessity. Without your help, we cannot keep doing what we do. So please, give generously. Thank you.


Hump Day Headlines

Had a lot of fun speaking at UConn Business School last night. Today's an ordinary day, though, so we start with the news:

First, the payroll tax cut. The NY Times points out that the GOP is in favor of extending the Bush tax cuts for the wealthy, but they're against extending the far less expensive payroll tax cut unless it's paid for. The Dems have proposed paying for it with a tax on incomes over $1 million. Some GOPers seem to be willing to consider extending the payroll tax cut, but they want to find other ways to pay for it. They say taxing millionaires will hurt small businesses.

Many states that oppose the health reform law are taking federal money to implement it. Here are some specifics. A touch hypocritical, no?

Eric Cantor has praised President Obama's pick to run the Centers for Medicare and Medicaid Services, Marilyn Tavenner. Surely, this is a strong sign that she will sail through the confirmation process.

Only 28% of Americans with HIV are receiving optimal therapy. This is scandalous, no?

Kids are being fed in schools as their parents are laid off and can't afford to feed their families. While I'm glad the schools are stepping in, I'm disgusted that it's come to this.

The YMCA -- one of the nation's largest day care providers -- is promoting healthy living standards with nutrition and exercise.

Hallucinogens and other street drugs are being tested for medical uses. Hey -- when you're sick, whatever works!

Medicare is going to start paying for obesity prevention as a way of trying to cut overall costs. Along those lines, it's a struggle to get obese kids to lose weight. I know -- I was one, and here I am, still obese (although I hate that word), still struggling every single day.

A women's health clinic in Rome, Georgia provides free care to those in need.

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

Tuesday, November 29, 2011

Need Help Getting Around?

Message from Metro Taxi:

Beginning in December, Metro Taxi will launch a fleet of brand new wheelchair accessible taxicabs that are spacious and comfortable. The individual using the wheelchair is secured in the front passenger position next to the driver. This newly-produced taxi, the MV-1, will be in addition to our existing accessible taxis. We will provide service to our current territory, which covers Branford, Bridgeport, East Haven, Guilford, Hamden, Meriden, Milford, New Haven, North Branford, North Haven, Orange, Stratford, Trumbull, Wallingford, West Haven, and Woodbridge.

The MV-1 taxi was designed to be an accessible taxi and is not retrofitted. Metro Taxi, because of its concern for the environment, chose to have these vehicles come factory-equipped powered by Compressed Natural Gas (CNG), a U.S. produced alternative fuel with much lower carbon emissions. The MV-1 is the state-of-the-art in accessible, environmentally friendly transportation. Metro Taxi has brought them to Connecticut.

For more info, contact Kris Barber, Disability Advocate, at

Tuesday Tidbits

Gonna be a super busy day, ending with a talk at UConn Business School, which should be fun. But first, the news:

The Dems are moving on extending the payroll tax cut. They propose to pay for it with a tax on people earning over $1 million, so the GOP is against it -- big surprise. This is all kind of silly because the payroll tax goes into the Social Security trust fund, not the general treasury, so the issue of paying for it is really a non-issue. But this is our Congress.

Will the Supreme Court allow arguments in the health reform case to be televised? Probably not -- but if they do, you know I'll be stuck to a TV screen that day.

Medicare payments to doctors are set to drop by about 39% on January 1 if Congress doesn't act to delay the cuts, as they have done several times before. If they don't, look for more and more doctors to refuse to participate in Medicare -- a huge blow to a critical program. In good news, it appears that President Obama's nominee to take over the Centers for Medicare and Medicaid Services (CMS) is being well-received, even by the GOP.

Want to know what the automatic cuts are that will kick in because of the supercommittee's failure to reach an agreement? There's some pain in it for everyone.

A cure for AIDS? The stories of two patients suggest this may be a reality. Wouldn't that be awesome?!

States are being cautious in setting up exchanges in light of the possibility that the Supreme Court will strike down the law. Some states are moving ahead; others are waiting. My bet is that this part of the law does not get struck down. States should be moving. Meanwhile, the feds have denied applications for waivers from Indiana and Louisiana, who wanted out from under the medical loss ratio requirements (percentage of premium dollars spent on health care). Good decision.

I've been keeping away from campaign news, but this one is too good -- What do Obama, Romney and Gingrich have in common? They all favored health reform, including the individual mandate!

Four drugs case the most hospitalizations in older Americans -- Coumadin, insulin, and other blood thinning and diabetes meds.

Is your dentist over-treating you? I've thought this about mine for a long time.

A medical mystery, a diagnosis -- and then what?

Has a medical test result of yours ever gotten lost? I don't think this has ever happened to me, but I'd sure be unhappy if it did.

Tips on avoiding getting sick this winter. Number one: wash your hands.

Geriatricians -- under-utilized, ignored, but really important. They believe in having end of life discussions openly and frankly with patient and family.

Music therapy can retrain an injured brain. It's not bad for a healthy one, either!

Generic Lipitor goes on sale this week. Read the instructions.

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

Monday, November 28, 2011

Monday Musings

I am thoroughly bummed about being back at work. I think I'd have been in really good shape with another couple of days. But you gotta do what you gotta do, so here I am, in the office at 6 am, trying to psych myself up. Will the news help or hurt? We're about to find out:

We're back to the fight over whether to extend the payroll tax cut. You've been paying less than the norm of FICA tax throughout 2011. Will this cut be extended to 2012? We may find out later this week, but the GOP is already saying it didn't lead to job increases, so no reason to extend it. If it's not extended, you'll pay about $1000 more in tax in 2012 than you did this year. Some GOPers say it will pass. Others say no way.

And then, of course, there's still the rest of the 2012 budget to agree on. Five agencies are set for the year, but the rest are only funded through December 16. Can Congress agree on anything?

Okay, you can be scared now. A bipartisan group of members of Congress are favoring providing Medicare beneficiaries with a lump sum to buy Medicare insurance rather than providing it through the government. A gift to the insurance industry. And if you think you'll get coverage of the same things through insurance that you get through Medicare, think again. This is a disaster. We must speak up and be heard on this one.

Meanwhile, because the GOP blocked the appointment of the most qualified person on earth to run the Center for Medicare and Medicaid services, Dr. Donald Berwick, he steps down this Friday as his recess appointment expires. This is a huge loss for America. The GOP claimed he was in favor of rationing health care. He never said that. He is a visionary and has launched several pilot programs to test new health care delivery systems during his tenure in office. It's a shame that we will lose his inventiveness when we need it the most. The President has nominated Berwick's deputeee, Marilyn Tavenner, whose experience lies in management rather than policy.

A fight over who should hear the health reform case. Should Clarence Thomas recuse himself from hearing the challenge to the health reform law because his wife is an active opponent and he "forgot" to report his wife's income for several years? Should Elena Kagan recuse herself from hearing the case because she was Solicitor General when the law was passed and some claim (without evidence) that she engaged in discussions of legal strategy to support the law? No way will one be recused without the other; doing so would ensure a victory for the other side.

Safety net hospitals lack electronic medical records, which means doctors have to hope they guess right about a patient's medical history. They say they are flying blind. I do not want my doctor flying blind, ever.

A push towards state regulation of insurance premium rate hikes in California. This needs to be national.

Taking too much Tylenol (acetaminophen) can harm your liver and ultimately kill you.

The growth in school-based health clinics. Making sure kids have a place to go to get free or discounted care.

Three confirmed cases of swine flu. Have you gotten your flu shot yet?

Employers are creating incentives to prod employees to improve their health, stop smoking, lose weight.

Doctors are being paid by pharmaceutical companies. Can you say conflict of interest?

A candid and poignant story about living with severe mental illness. Really, not so different from living with any chronic illness -- baby steps, one at a time.

Success means borrowing other people's expertise, not trying to do it all yourself. I have trouble with delegating, but at times, you have no choice. Anybody know how to build an App for Advocacy for Patients?!!!

Medicare open enrollment ends on December 7. Please don't forget. This year's doughnut hole is a lot smaller due to health reform. So pick your plan wisely and look forward to reaping some of the benefits of health reform.

And that's how our week begins. Have a great day! Jennifer

Thursday, November 24, 2011

Turkey Day Edition

No news today -- just thanks. I am grateful to every one of you who reads this blog. For the most part, I don't know who you are, but every once in awhile I get an email from someone I don't know telling me they've been following my blog -- so I know you're out there.

I understand chronic illness from the perspective of a patient and from the perspective of someone who tries to help others with chronic illnesses. I understand 24/7 pain, nausea, and fatigue that is overwhelming.

But I still believe that every one of us has something to be thankful for. A friend. A family member. The sun. A pet (I am most thankful for my Emily). Waking up in the morning. Sleep. A home. A bed. A doctor. A child's smile. The randomness of it all. Acceptance.

So today, focus on the one thing in your life that you are thankful for, and let everything else fade away, just for today. Just today.

Have a wonderful Thanksgiving. I am thankful for you. Jennifer

Wednesday, November 23, 2011

Thanksgiving Eve Edition

One. More. Day. But first, the news.

There's a lot of commentary on the failure of the supercommittee. Conservative groups are pleased because it means the GOP stood strong on tax increases. Others say the supercommittee members had the worst week in Washington. Some say the supercommittee was doomed from the start. A Gallup poll says Americans are split on whether to blame GOP or Dems.

Politico says the Medicare genie is now out of the bottle, meaning that it's becoming politically acceptable to talk about ways to cut Medicare spending. The devil here is very much in the details. But no question that health care is on the chopping block.

The President has switched gears from the supercommittee to an extension of the payroll tax deduction. Expect your paycheck to shrink if this doesn't pass by the end of the year.

The GOP is pressing Justice Kagan to release records in an attempt to show that she was involved in planning legal strategy for health reform when she was Solicitor General. Of course, if they were to succeed in getting her off the case, they surely would win the case. An end run around the Constitution?

Really bad news. The National Association of Insurance Commissioners has voted to urge the feds to include agent/broker commissions on the health care side of the medical loss ratio equation. The medical loss ratio is the percentage of premium dollars spent on health care. Plans have to spent 80% (individual) or 85% (group) of premium dollars on health care or they have to pay rebates to members. The remaining 20 or 15% represents administrative costs. Until yesterday, there was agreement that agent/broker commissions were on the administrative side. Yesterday, NAIC voted to move them to the health care side, which undermines the effort to curtail rate hikes. Bad news for consumers.

The US spends 2.5% more on health care than other countries, and we aren't getting a lot of bang for our buck.

Interesting piece -- emergency doctors warn of challenges in different payment models like medical homes. If a primary care doctor is being paid per episode rather than for each individual service, where does the ER doc come in?

A compelling story of a family's journey into long-term care for a 52 year old who suffered brain damage when he was a child.

If you're like me, the fat gene runs in the family. But that doesn't mean you can't conquer the demons.

Giving thanks helps your psychological outlook. And so, dear readers, I give thanks for YOU!

Have a great day, and a wonderful Thanksgiving. See you next week! Jennifer

Tuesday, November 22, 2011

Day Two of Three Edition

Two more days -- I know we can make it! But first, the news:

The supercommittee waited until after the markets closed yesterday to announce that they would not be able to come up with a deal by tomorrow. We, the people, are disgusted, but not surprised. As you know, the law had a trigger, so if the supercommittee failed, there would be an automatic $1.2 trillion in cuts taking effect in 2013, after the election. The President had faith that the GOP would never agree to the revenue raisers that a real deficit cutting plan requires, so he decided to leave it up to the voters. And now, we get to see the blame being cast in both directions. World markets tumbled, so hold onto your hats for the US market reaction today.

The supercommittee's failure doesn't mean there will be no more talk of Medicare and Medicaid cuts; it means the discussion has to be different -- but brace yourself, because it's going to happen.

The next battle? Stimulus provisions that will expire at year end. You may not remember this, but you've been paying less in FICA tax this whole year. If Congress doesn't act, you'll go back to your usual tax rate, which will increase your taxes about $1000 over the year. In addition, the extension of federal unemployment benefits will expire.

And then there's the "doc fix." Medicare payments to doctors are set to decrease by about 30% at the end of this year. This cut has been postponed many times. Will it be postponed again? Not a lot of time to figure this out.

Insurers are worried -- rightly -- that the Supreme Court will strike down the individual mandate, but leave the rest of the law intact. As I will keep explaining until I'm blue in the face, if you want to cover people with pre-existing conditions -- expensive people -- you need a pool that also includes healthy people, which is why the individual mandate was creates. And to have an individual mandate, insurance must be affordable, which is why subsidies were created. Everybody agrees pre-existing conditions should be covered. But you can't be for that and against the mandate. You just can't.

Being thankful improves health, so teach your kids to be grateful. There's your Thanksgiving gift from me (and WaPo).

Some are looking to Medigap plans to try to curb Medicare spending. They believe that people with supplemental plans that pay their copays use more health care than they need. As miserable as it is to get involved with the health care world these days, I don't believe this for a second.

More employers are using high-deductible health insurance plans. That just means more people will go without health care, moving us in the wrong direction. Indeed, health costs are falling due to the recession.

AIDS deaths are new infections are down worldwide. Wonderful!

New clinics are a real alternative to the emergency room.

A judge in the Bronx has devised a model that he hopes will fast-track medical malpractice cases, making them less expensive.

The elderly get less pain medication in emergency rooms.

Patients turn to the internet to raise money for health care. While I think it's a shame that it's come to this, I'm heartened by the fact that people do give.

Truckers working on their health. Next thing you know, they'll be serving tofu at truck stops! But seriously, I think it's great.

Thin people are at greater post-surgery risk. Hmmm. The researchers don't know why.

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

Monday, November 21, 2011

Supercommittee Folds

Politico just announced that the supercommittee has ended its work without reaching a bipartisan agreement regarding the nation's debt.

In a statement released Monday shortly after U.S. financial markets closed, co-chairs Rep. Jeb Hensarling (R-Texas) and Sen. Patty Murray (D-Wash.) announced that they had "come to the conclusion today that it will not be possible to make any bipartisan agreement available to the public before the committee's deadline."

Despite their panel's failure, the two co-chairs tried to sound optimistic: " Despite our inability to bridge the committee's significant differences, we end this process united in our belief that the nation's fiscal crisis must be addressed and that we cannot leave it for the next generation to solve."

Feds Find Insurer's Rates Too High

News Release

November 21, 2011

Contact: HHS Press Office
(202) 690-6343

Health insurer charging unreasonable rate increases

Affordable Care Act shines a light on insurance company rate hikes, helps keep money in the pockets of Americans

Everence Insurance of Pennsylvania is charging small businesses unreasonably high premium increases according to the first federal rate review under the Affordable Care Act, the U.S. Department of Health and Human Services (HHS) announced today.

“We hope that by publicizing the excessive premium hikes, we will empower consumers,” HHS Secretary Kathleen Sebelius said. “By shining a light on unjustified premium increases, we will hold health insurers accountable like never before, and help keep money in the pockets of Americans.”

Today’s announcement marks the first of many reviews that HHS will perform in addition to insurance rate reviews already being done by states. Proposals to raise rates by 10 percent or more will be reviewed.

The HHS review has found that Everence’s 12 percent rate increase for small businesses in Pennsylvania was excessive. After reviewing the rate, independent experts determined the choice of assumptions the company based its rate increase on reflected national data rather than reliable and available state data. These assumptions resulted in an unreasonably high premium in relation to the benefits provided.

“We have called on this insurer to immediately rescind the rate, issue refunds to consumers or publicly explain their refusal to do so,” said Steve Larsen, director of the Center for Consumer Information and Insurance Oversight at the Centers for Medicare & Medicaid Services.

Companies can either reduce their rate hikes or post a justification on their website within 10 days of the rate review determination.

For more information about this rate review and to find rate increase information in your state, visit:

For general information about rate review, visit:


Day 1 of 3 Edition

Only a three day week this week, so let's make it a good one.

All signs are that the supercommittee has failed. They plan to announce their failure today. The deadline is Wednesday, but at this point, the parties are just blaming each other for failure rather than trying to come up with a midnight solution, although some won't say it's over 'till it's over. The GOP would not agree to a deal that raises taxes -- and at some point, making the Bush tax cuts became a GOP condition that the Dems could not agree to. The Dems would not agree to a wholesales restructuring of Medicaid and Medicare. In other words, the supercommittee failed for the same reasons the President and Speaker Boehner failed months ago. How will this failure affect the markets? Ezra Klein says no biggie since there will be automatic cuts in 2013 instead. More on how the markets may react -- or not.

After the election, though, expect cost cutting -- and expect a focus on health care.

Meanwhile, southern states like Georgia are working to set up exchanges even though they oppose the health reform law, just in case the Supreme Court upholds the law.

A tale of two recusals? Justice Thomas is being asked to recuse himself from hearing the health reform law case because his wife is such an ardent, vocal opposer; Justice Kagan is being asked to recuse herself because she was Solicitor General under President Obama and may have had a hand in shaping legal strategy. My prediction: Neither of them will sit this one out.

A fascinating move by the Supreme Court, which has appointed two lawyers to argue positions that nobody agrees with. One will argue that the law can stand even without the individual mandate; the other will argue that the mandate cannot be challenged until it takes effect. And here's a sort of decision-tree that helps explain the health law cases.

As the Department of Health and Human Services finalizes regulations on the essential benefits package -- the things that must be covered by plans participating in state exchanges -- there's quite a rift forming over whether birth control should be provided free of charge. The Catholic church is looking for a broad exemption for churches, schools, nonprofits -- anybody with a "conscientious objection." Is that fair to their employees and their employees' dependents who will be covered under those plans?

Hospitals are looking for ways to save money without sacrificing care. Can medical cost cutting improve care?

The FDA has revoked approval of Avastin for breast cancer, saying it's not effective enough to justify the risks.

Drugs used for psychotics are prescribed for kids in foster care at an alarming rate.

Last week's quiz -- multiple endocine neoplasia (MEN) Type !

Want to become a morning person? Here's how.

If you remember when Our Bodies, Ourselves came out, you're old like me. It's turning 40 this week! Oy.

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

Friday, November 18, 2011

Finally -- Finally -- Friday Edition

I feel like this week is more like two weeks. Then again, working 60 hours in 4 days could make you feel that way. Well, at least there's only one more day to get through before I get to snuggle with my cat and get some rest. But first, the news:

Congress passed a budget bill funding 5 agencies for all of 2012 and all of the federal government through December 6. It's long on law enforcement, short on funds for local governments. And they slashed funding for construction of housing for the poor by 38 percent.

The supercommittee doesn't appear to be making any progress. If they fail, what happens? WaPo says nothing. I've read previously (see prior blog posts) that there's a real fear about how the markets will react. That's actually my biggest concerns. The automatic cuts that would be triggered do not take effect until 2013, so that's plenty of time for Congress to undo the deal if they choose. As for tax increases, the GOP is still not where it needs to be, but people are talking about not whether to raise taxes, but how. Progress? With so few days left, it's hard to say. People in the know are pretty pessimistic. Indeed, Politico reports that talks are on the brink of collapse. According to The Hill, the GOP want President Obama to intervene.

USA Today says the supercommittee is looking at ways to cut the cost of treating "dual eligibles" -- people with both Medicaid and Medicare -- whose care is often fragmented and always very expensive. The thought is to move them into managed care. I'm so wary of these privatization "fixes" -- managed care was a huge waste of money in Connecticut's Medicaid program. I'm not convinced that handing a problem over to private insurance companies solves anything.

With a few weeks left of open enrollment, a new report shows that Medicare copays for brand name drugs are going up, a lot.

California and disability advocates have reached an agreement that will keep adult day healthcare centers open. Good work.

We are not doing enough for kids' heart health, says a report that focuses on diet, cholesterol, and exercise.

And last but not least, here's my op-ed on why consumer representatives are needed on the Board of the Connecticut Health Insurance Exchange.

And that's it -- a slow news day. Have a great day! Jennifer

Thursday, November 17, 2011

Thursday Themes

I'm about out of steam, but before I collapse, here's the news:

The House passed the same two pieces of the jobs bill that the Senate previously passed -- one eliminating 3% withholding from government contractors and one providing jobs for veterans.

The GOP is struggling over whether and how much to compromise on tax increases. Supercommittee members have realized they have to give on this issue, but not everyone in the party agrees. Still, GOP co-chair Hensarling says he's willing to consider new Dem proposals. However, he also says that the Dems have to accept big cuts to Medicare. The Dems say the GOP has to drop the demand for reducing the tax rate on the wealthiest Americans. There's also lots of finger-pointing on who's to blame for the current impasse.

You know the Supreme Court agreed to hear the health reform case. Some are surprised and troubled by their decision to hear not only the individual mandate, but also the Medicaid expansion. Does this signal that they might overturn it? Meanwhile, many politicians running for office in 2012 are going to be affected by whatever the Court does.

Sort of complicated lawsuit alleges that Medicare HMOs moved patients into hospice even if they weren't terminal just to get more money out of Medicare. The key is that at least one executive worked for both the HMO and the hospice.

A new study shows health insurance premiums rising in every state.

Baby boomers don't have living wills. Do you? You should.

Some companies are starting to charge more for health insurance for employees who smoke or are obese.

Oregon tested the use of iPads to assist disabled people to vote.

Here's another of those quizzes from the NY Times. This time, the patient has sudden onset, right-sided abdominal pain. Guess what he has. I love these.

Diabetics facing employment discrimination. In this case, bus drivers who were suspended even though they are not insulin dependent and pose no particular risk.

Women are more likely to have broken heart syndrome than men.

More than 20% of Americans are on medication for anxiety or depression.

And there you go. Have a great day! Jennifer