Tuesday Tidbits

Yesterday was a very busy day and today will be another -- lots of health reform implementation stuff. The news is full of bin Laden, of course, but let's see what else there is:

The GOP House continues to vote to chip away at health reform -- this week, they vote to defund the exchanges because they don't want you to be able to buy insurance more easily and affordably, and school-based health clinics because, well, I guess they want your kids to be sick. What other explanation is there for opposing these obviously good parts of reform? Interestingly, if there are no state exchanges, the law says the federal government has to create one -- and something tells me that's not what the detractors really want. The President says he would veto this bill anyway.

Meanwhile, there's a huge effort going on in the states to get exchanges up and running. It takes a lot of work -- not only the legalities, and questions about how to operate exchange that are left to the states so they would have flexibility; but also the IT piece, which is difficult. As state legislatures fail to pass authorizing legislation, states risk the feds coming in and running an exchange for them -- and they're not happy with that, either.

Graduating college students now have the option to go back on their parents' plan to age 26 -- one of the early benefits of health reform.

Record health insurance premium increases have led the California Insurance Commissioner to ask for authority to regulate rates. About time.

89 people were arrested for protesting the GOP plan to cut Medicaid.

The feds are on the road, trying to help states gear up and work out the kinks of health reform. Here's a great profile of the New England Region's HHS director -- a graduate of UConn law school, no less.

Gail Sheehy says caregivers need government help or they'll go broke.

People with deep belief in God are more likely to spend money for expensive treatments to fight cancer than people with lesser faith.

An interesting study on social norms and how they influence our behavior. And another amusing piece on studying sex -- are we happier because we're having sex, or are we having sex because we're happier?

Women skip pap smears because they have no insurance and can't afford to see a doctor. And is hormone replacement therapy all bad?

Eat more of certain foods and lose weight. And work on your balance as you get older. But how much testing is too much, as you hit middle age and are told to screen for a battery of illnesses? Some say there's a risk of overdiagnosis of prostate cancer due to screening.

Meditation's benefits continue to be discovered and expand. Serotonin's role also continues to emerge. And a new study says one drug is enough to start with in treating depression.

This is sort of weird and interesting -- fire walkers and their piggy-backed relatives had simultaneous heartbeats.

New books for special needs children. Very cool.

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

Monday Moaning

I hate Mondays -- period. Here's the news (health news, not the death of OBL):

Finally, another major newspaper picks up the report on the World Health Organization's focus on chronic disease, which accounts for 63 percent of deaths in the world, 70 percent in the United States. They are focusing mostly on tobacco, salt and sugar, as well as alcohol consumption and exercise. Not exactly where I'd have started, but at least we're finally talking about chronic disease.

Congress returns this week with the issue of increasing the debt ceiling on the front burner. There seems to be some feeling that it should be tied to controlling the debt, but there's no agreement on how those controls should operate. WaPo says Congress is in for a long fight, but time will run out as we near the debt limit. VP Biden is leading the way for the White House.

The GOP plan to end Medicare as we know it is supposed to be like regular insurance, but a closer look shows that's not quite the case. Here's another fact-checker of the plan. The plan resembles a plan that was dreamed up in 1999 and went nowhere. One of the supporters of the plan has been exposed for inaccurately citing a report -- by the author of the report! The GOP is being booed at town hall meetings, although since they're back in Washington this week, the public is going to have to work harder to get the message to them. Remember, you can find your Senators here and your Representative here.

At least 600,000 young adults have enrolled in their parents' health plan. That's 600,000 who most likely wouldn't have insurance otherwise.

There's a serious drug shortage in the United States, endangering patients.

How much medical testing is too much? How to choose the right screenings.

Last week, a federal court reversed a prior decision, clearing the way for federal funding of stem cell research. More here. And here, the NY Times breaks down a very complicated case about data mining that matters to you.

A story about a stem cell transplant and what it means to two families.

Indiana cuts funding for family planning grants.

An interesting story about a geriatric psychiatrist.

Have a great day. Jennifer

HHS Presser on New Value-Based Hospital Reimbursement

FOR IMMEDIATE RELEASE Contact: HHS Press Office

Friday, April 29, 2011 (202) 690-6343

CMS Public Affairs

(202) 690-6145

Administration Implements Affordable Care Act Provision to Improve Care, Lower Costs

Value-Based Purchasing Will Reward Hospitals Based on Quality of Care for Patients

The Department of Health and Human Services (HHS) today launched a new initiative which will reward hospitals for the quality of care they provide to people with Medicare and help reduce health care costs. Authorized by the Affordable Care Act, the Hospital Value-Based Purchasing program marks the beginning of an historic change in how Medicare pays health care providers and facilities—for the first time, 3,500 hospitals across the country will be paid for inpatient acute care services based on care quality, not just the quantity of the services they provide.

This initiative helps support the goals of the Partnership for Patients, a new public-private partnership that will help improve the quality, safety and affordability of health care for all Americans. The Partnership for Patients has the potential over the next three years to save 60,000 lives and save up to $35 billion in U.S. health care costs, including up to $10 billion for Medicare. Over the next ten years, the Partnership for Patients could reduce costs to Medicare by about $50 billion and result in billions more in Medicaid savings.

“Changing the way we pay hospitals will improve the quality of care for seniors and save money for all of us,” said HHS Secretary Kathleen Sebelius. “Under this initiative, Medicare will reward hospitals that provide high-quality care and keep their patients healthy. It’s an important part of our work to improve the health of our nation and drive down costs. As hospitals work to improve their performance on these measures, all patients – not just Medicare patients – will benefit.”

In FY 2013, an estimated $850 million will be allocated to hospitals based on their overall performance on a set of quality measures that have been shown to improve clinical processes of care and patient satisfaction. This funding will be taken from what Medicare otherwise would have spent, and the size of the fund will gradually increase over time, resulting in a shift from payments based on volume to payments based on performance.

“Medicare is in a unique position to reward hospitals for improving the quality of care they provide,” said Centers for Medicare & Medicaid (CMS) Administrator Donald Berwick, M.D. “Under this new initiative, we will reward hospitals for delivering high-quality care, treating their patients with respect and compassion, and ensuring they have the opportunity to participate in decisions about their treatment.”

Some of these measures will assess whether hospitals:

· Ensure that patients who may have had a heart attack receive care within 90 minutes;

· Provide care within a 24-hour window to surgery patients to prevent blood clots;

· Communicate discharge instructions to heart failure patients; and

· Ensure hospital facilities are clean and well maintained.

The measures to determine quality in the Hospital Value-Based Purchasing Program focus on how closely hospitals follow best clinical practices and how well hospitals enhance patients’ experiences of care. When hospitals follow these types of proven best practices, patients receive higher quality care and see better outcomes. And helping patients heal without complication can improve health and ultimately reduce health care costs. For example, ensuring heart failure patients receive clear instructions when they are discharged on their medications and other follow-up activities reduces the likelihood that they will suffer a preventable complication that would require them to be readmitted to the hospital.

The better a hospital does on its quality measures, the greater the reward it will receive from Medicare. The measures selected for the Hospital Value-Based Purchasing program in FY 2013 have been endorsed by national bodies of experts, including the National Quality Forum. Hospitals have been reporting on quality measures through the Hospital Inpatient Quality Reporting Program since 2004, and that information is posted on the Hospital Compare website. For a complete list of quality measures, visit www.HealthCare.gov/news/factsheets/valuebasedpurchasing04292011b.html.

In the future, CMS plans to add additional measures that focus on improved patient outcomes and prevention of hospital-acquired conditions. Measures that have reached very high compliance scores would likely be replaced, continuing to raise the quality bar.

The Hospital Value-Based Purchasing initiative is just one part of a wide-ranging effort by the Obama Administration to improve the quality of health care for all Americans, using important new tools provided by the Affordable Care Act. The Partnership for Patients is bringing together hospitals, doctors, nurses, pharmacists, employers, unions, and state and federal government committed to keeping patients from getting injured or sicker in the health care system and improving transitions between care settings. CMS will invest up to $1 billion to help drive these changes. In addition, proposed rules allowing Medicare to pay new Accountable Care Organizations (ACOs) to improve coordination of patient care are also expected to result in better care and lower costs.

For a fact sheet on the Hospital Value-Based Purchasing program, visit www.HealthCare.gov/news/factsheets/valuebasedpurchasing04292011a.html. To learn more about Hospital Value-based Purchasing, please visit www.cms.gov/HospitalQualityInits.

The final rule establishing the program was placed on display at the Federal Register today, and can be found online at: http://www.cms.gov/HospitalQualityInits.

More technical information about the final rule, including the measures CMS has included in the program, as well as CMS’ scoring methodology, is included in a Fact Sheet posted on our Web page at: http://www.cms.gov/apps/media/fact_sheets.asp.

###

The Hunger Strike That Wasn't

I have had a very serious conversation with my doctor about whether I can fast for 30 days. He's strongly advised me against it. He feels that what I read, which makes it sound pretty safe if you fast for only 30 days and you drink water and take salt really applies to healthy people. He's concerned about even taking all of my medicine without any food in my stomach and the harm that might cause. Of course, this is why he's a doctor and I'm not.

I want you to understand where my desperation comes from, though, because it's important. A few months ago, I lost an insurance appeal for a 20 year old girl with complex regional pain syndrome. She's been all over the world for treatments -- German, Austria, Mexico -- and tried everything, including some pretty crazy things. She finally found a doctor in Philadelphia who tried IVIg and it worked. This young girl all of a sudden had a life. She could go to college. She could do crafts. She could have something of a life. But her insurance company wouldn't pay for IVIg for CRPS. We did an external appeal to a 3 doctor panel. This was the most monumental insurance appeal I've ever filed. There were over 1000 pages of medical records and lots and lots of medical research, and a 23 page appeal letter. One of the three doctors said of course, since she's tried everything else, and since we know this works, she should get the IVIg. But the other two said there was insufficient evidence to show that IVIg was better than the standard options. I swear, that's what they said. There were 1000 pages of evidence that IVIg worked and nothing else did. There are no standard options, and whatever options there are were tried. Losing that appeal devastated me. If I can't win that case for that young girl, what am I really doing?

Fast forward to this week. We got an email from a man with chronic inflammatory demyelinating polyneuropathy. He works and earns $200 per week -- too much for Medicaid. He has no health insurance. He's in terrible pain, and at times, he can't speak. He needs medical care. We spent a day and a half making phone calls and finally found a clinic that would get him in quickly, although it's an insufficient solution since he can't get to a specialist and he can't get the drug he needs, for which there is no patient assistance program. He lives in the shadows, and we're the first people who've even tried to help him. And our help is far less than he deserves.

When the World Health Organization came out with its statement yesterday that chronic illness is now the leading cause of death in the world and most major papers -- NY Times, Wall St. Journal, USA Today -- didn't even cover it, I went into a sort of panic mode. These people are desperate. They need medical care. Yet, budgets are being cut, and the safety net is eroding quickly. Everything bad that happens in the health care world is blamed on health reform, which everybody knows is only a first step, and since it's not even fully implemented yet, it's wrong to give up on it and declare it a failure because health care costs continue to rise. Yes, we need to do more. But we need people to get covered now, as quickly as possible. Health reform implementation is 2.5 years away, but we have to hang onto it because, with Medicaid expansion and subsidies, the man with CIDP will have coverage. It's still a long way off, but I understand that implementation of any major change would take time, and so we have to hang in. But I'm so scared that our society -- fueled by a bunch of radicals on the right who have no concern for facts -- will give up on it before it even takes full effect.

And then there's health reform implementation and the gains the insurance industry is making as they pressure the feds to do less than is needed. I'm particularly involved in the appeals regulations. It's killing me -- it's causing physical pain -- to listen to the Department of Labor say that self-funded plans don't want to have to do external appeals, and to actually buy into some of their ridiculously petty concerns.

And even when health reform is fully implemented, I will still lose insurance appeals that never should be lost. Whatever was in the minds of those two doctors when they said there was no evidence that IVIg was better than standard therapies is just perverse -- but it's also pervasive.

People are quietly dying. They have invisible illnesses, so they face disbelief and a lack of support and understanding. They are addicted to pain meds, and then the feds crack down on prescribing pain meds, and doctors just abandon them. Family and friends abandon them. Heck -- I don't have any social life because just leaving the house is so difficult for me, and since so few people get it, people don't come to see me -- they want me to meet them for dinner, which is something I just can't do. But they don't believe me. They don't get it.

This is a heck of a life and there are millions of us suffering like this. I see it. I feel it intensely. And I don't know how to change it. I don't know what it's going to take. Must we have sick people dying alone in sparse apartments where they've been warehoused without care or attention? Must we just let that happen, as it does every day, invisibly? How do we make the invisible visible? How do I get people to care?

If I figure out an answer, I will let you know. Until I do, I am in agony over the treatment of sick people, some of whom get less attention and caring than our family pets. If you have ideas, please tell me. Maybe, if enough of us came together, we could make a difference.

Can all of you please help me to make some noise, to tell this story, to make the invisible visible? Can you tell me how I can do more, do better?

We are collectively very powerful. Together, we can lift people up out of the darkness and demand that, if nothing else, Americans see the consequences of the choices they have made to ignore people with invisible chronic illnesses. Please, please help me. Jennifer

Finally Friday Edition

I have to do this quickly because I'm missing the wedding of the century!!! But first, the news.

Healthcare costs continue to grow in the US at a rate that exceeds that in other countries. This is not about health insurance premiums. This is not about health reform. This is about how we deliver health care, how much money providers are allowed to make, and the fact that many other countries have universal health care, so the system is far more regulated. But for our higher cost, we do not get the best value; quality lags far behind. This clearly has to change.

Now some Dems are threatening to vote against raising the debt ceiling without serious concessions on the debt and budget. Never mind that it would ruin the global economy if we defaulted on our debt.

Town hall meetings are still lively, as the public tells the GOP not to end Medicare as we know it. Lots of ads are going up on the airways, as well.

There will be a new payment system for hospitals in Medicare, and it will be based, in part, on how patients rate the level of care and services they got. There will be cuts in Medicare to nursing homes, as well, in part to make up for what the feds say was an overpayment this year.

Meanwhile, the GOP is demanding to know how much money the IRS is getting as part of health reform. But the military now will provide health care coverage to dependents up to age 26.

Aetna is scaling back rate hikes. I like Aetna better every day!

The FDA was supposed to define "gluten free" for food labeling 3 years ago, and they're still working on it.

Sleep. We need it. We don't get enough of it. That has to change.

Emergency rooms continue to be busy treating people with nowhere else to go.

And that's today's news. Now, let's go see Kate's dress! Have a great day! Jennifer

Hunger Strike

I am planning a hunger strike for chronic illness. The planning will take some time -- there's no point in doing it if I don't get any publicity -- but I can't stand how invisible we are any more.

From today's LA Times:

Chronic illnesses like cancer, heart disease and diabetes have reached global epidemic proportions and now cause more deaths than all other diseases combined, the World Health Organization (WHO) said on Wednesday.

In its first worldwide report on so-called non-communicable diseases, or NCDs, the United Nations health body said the conditions caused more than half of all deaths in 2008 and pose a greater threat than infectious diseases such as malaria, HIV and tuberculosis (TB) -- even in many poorer countries.

"The rise of chronic noncommunicable diseases presents an enormous challenge," WHO Director-General Dr Margaret Chan, who launched the report at a meeting in Moscow, said in a statement.

"For some countries, it is no exaggeration to describe the situation as an impending disaster; a disaster for health, for society, and most of all for national economies," she said.

NCDs, which include heart disease, lung diseases, cancer and diabetes, accounted for 36 million, or 63 percent, of the 57 million deaths worldwide in 2008.

And this story appeared ONLY in the LA Times. What the hell is wrong with us as a society when we care so little for our sick? I can't stand it any more. Jennifer

P.S. -- Just to be totally clear, I am not trying to commit suicide. If you drink water and take salt during a fast, you can go for a good 60 days -- people have gone way longer, and the length of time you'll be able to handle is longer the more body weight you have on you, which means I could easily go 60 days. But I think I would shoot for 30 days. Hopefully, that would be long enough to make my point.

I just wanted to be clear that I'm not doing this without researching, without medical approval, and familial approval. J

Thursday Themes

And here's today's news round-up:

The World Health Organization warns of the enormous burden of chronic illness. Chronic illnesses have reached epidemic proportions and are the leading cause of death -- more than HIV, malaria, tuberculosis -- and all across the globe.

On the budget, Speaker Boehner appears to be softening in his support for the Ryan budget that would eliminate Medicare and Medicaid as we know them. Senator Reid says he'll hold a vote on the Ryan plan in the Senate, forcing GOP to go on record in support of ending Medicare/Medicaid. And the GOP make a new argument in favor of the Ryan plan -- it's just like health reform!!! Well, not so much. But lobbyists are still out there criticizing health reform. And the GOP are facing stiff disagreement about their Medicare plan. And the Dems have jumped on this as an issue that may help them in 2012. A liberal policy group, the Center for Economic and Policy Research, says the GOP plan would increase health care costs by $34 trillion.

But for me, here's the really scary story. The GOP are planning to link sweeping financial cuts to the increase of the debt ceiling, forcing Dems and the President to agree to huge cuts or risk defaulting on our debt, which could cause a global economic crisis. Either the Dems agree to do something awful like eliminate Medicare as we know it, or they refuse to cave and we default on our debt. This is my opinion: The GOP should not hold us hostage over something as critical as the debt ceiling.

California passed a law allowing the State to stop insurers from raising rates unfairly. Other states are considering similar moves.

Florida moves Medicaid into HMOs to save money. It hasn't saved money in other states -- indeed, it's cost money here in Connecticut -- but states are desperate for fiscal relief. I just wish they could look around the country and see that privatization is not the answer.

If you want to be happy, avoid your cell phone, make a donation to charity (I know a good one) and elect your boss. A new movement with a website called actionforhappiness.org modeled on the teachings of the Dalai Lama.

Merck is pitching a Hep-C drug to the FDA. This would be amazing.

A new checklist may help diagnose autism in babies as early as 1 year old.

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