Medicare Case a Win For Patients
With Chronic, Debilitating Conditions, Disabilities

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Patients on Medicare with chronic conditions and disabilities will no longer have to show improvement to get skilled care and therapy services, according to a proposed settlement of a class action suit, Jimmo v. Sebelius. The settlement clarifies the standard for Medicare coverage, ending the practice of denying coverage to patients deemed no longer able to improve, which was never part of the Medicare statute.  Proponents say that Medicare patients likely to benefit include those with disabling conditions, including multiple sclerosis, Parkinson’s disease, arthritis, stroke, and heart disease.

“We were plaintiffs in this suit,” said David Chatel, Executive Vice President, Government Affairs, National Multiple Sclerosis Society, Washington, DC. Chatel was adamant that this is  “not a new benefit, but a clarification for patients that were inappropriately denied coverage.” Importantly, the Medicare statute never included an improvement requirement. However, patients seeking rehabilitative therapies (speech, physical therapy, and occupational therapy, for example)are frequently turned down because they failed to show progress. Once they fail to show progress, they are put into a “custodial” classification, not covered by Medicare. As a result, the practice has left patients likely to benefit from services abandoned by the system and at increased risk of further deterioration and hospitalization.

The Maintenance Standard

Under the settlement, Medicare must pay for:

  • outpatient therapy,
  • home health care, and
  • skilled nursing

if needed to “maintain the patient’s current condition, or prevent or slow further deterioration.”

Aditya Ganapathiraju sustained a spinal cord injury several years ago. At the time of the accident, he was extremely weak and did not use much physical therapy. “I was in a lot of pain and lost a lot of weight,” he said. “Had I been able to get therapy post injury, I might have made a lot more improvement much earlier. Ganapathiraju says that he has used physical therapy extensively to help him with transferring and strengthening, permitting him to do a host of things he never could have envisioned at the start.  For example, he now drives, went back to school and graduated from the University of Washington Seattle, and is involved in training and research in rehabilitation medicine at the University of Washington. He is also an advocate with a presence on YouTube.

Ganapathiraju added: “The notion of maintenance to prevent further degradation is well founded. You can quickly degenerate quickly post injury.” Among the many benefits that he sees include prevention of contractures [abnormal, permanent shortening of muscle], prevention of surgery, improving seat function, and activities of daily living.”

But what really troubles Ganapathiraju is the notion that a condition prevents people from functioning in day-to-day life. “It’s really a subjective standard and can prove a self-fulfilling prophecy,” he said.

Cost Considerations

Some accounts of the clarification of the Medicare standard claim that it will prove cost-prohibitive. “That’s kind of a red herring,” said Ganapathiraju. “Medicare financing is entirely a political decision. With just a modest increase in the taxes of the very rich, we could really afford Medicare for All.”

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Acclaimed Books, Films, and Projects About
Alzheimer’s Disease, Other Dementias, and Memory Loss

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Books, films, and innovative projects on Alzheimer’s disease, dementia, and memory loss are growing. I have assembled a short list of them.There are many foreign films, particularly from South Korea and Japan that are excellent. I hope that US distributors make them easier to get. Please feel free to add more in the comments section after this post.

Anne Davis Basting. Forget Memory: Creating Better Lives for People With Dementia. As Basting writes: “Wrestling with the meaning and role of memory in our lives can help us to understand our fears of its loss – and to imagine how investing in a “cultural cure” (raising awareness and reducing stigma) can go a long way toward relieving the symptoms of memory-related diseases and conditions.”

Anne Davis Basting. The Penelope Project. Innovative theater project. As Anne writes in her blog: “After 2 years of explaining, I think I finally made sense. This show is about telling the vast majority of America that they are wrong aboutold people and retirement communities. Regardless of disability –this is and can be a place of growth and learning. Like Penelope, we have dignity, complexity, cunning,wisdom, nobility – even if the world simply thinks we are waiting and doing nothing.”

David Shenk. The Forgetting: Alzheimer’s: Portrait of an Epidemic. If you  read one book on Alzheimer’s, this is an excellent choice. Shenk is an excellent journalist and storyteller. Also available on PBS as a film in English and Spanish.

Hilda Goldblatt Gorenstein. Hilgos Foundation. I Remember Better When I Paint. 2009 documentary that shows how creative arts may help Alzheimer’s patients re-engage in life, through painting, visiting art museums, and performing music. Available on DVD.  Youtube trailer for film.

Lee Jae-han Director. Eraser in My Head also called A Moment to Remember. Outstanding 2004 South Korean film. Available for download from South Korean websites.

Memory Bridge. The Foundation for Alzheimer’s and Cultural Memory. Memory Bridge creates programs that connect people with Alzheimer’s disease and related dementias to family, friends, and other people in their local community. Memory Bridge also creates programs that show  the depths of memory that dementia does not erase

Nancy L. Mace, Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. (A Johns Hopkins Press Health Book) now in its 5th Edition. Many consider this the best caregiver’s guide.

Alzheimer’s Disease Issues – Day 2:
Let’s Keep the Conversation Going

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I spent today at an all day Alzheimer’s meeting, taking notes and tweeting. I am also exhausted. Many of you know that this is my 23rd consecutive day blogging here. There are a lot of pluses to posting every day, but on a night like this, where I have been focusing all day on new, often dense material, I run the risk of being incoherent.

Here are some issues that are related to aging, Alzheimer’s, and dementias, that we all might want to think about:

I am tremendously concerned about the future of Medicare and access to affordable drugs and long-term care services. I also worry about extension of the retirement age that is under discussion when so many Americans over age 50 don’t even have work or are under-employed. News that women are not bounding back to work as quickly as men is frightening. The jobs picture must change.

Like many disease categories, Alzheimer’s is spoken of frequently in terms of early detection and urging transparently charting it on people’s medical records. Yet, as speakers pointed out, once someone is labeled as having cognitive problems on health records, they may become more dispensable at work because Alzheimer’s care is extremely costly. How can we come to grips with this?

Stigma associated with cognitive impairment remains huge, current treatment may alleviate symptoms in some, but treatments only help a small proportion of a people for a relatively small window of time.

There is a movement promoting using creative arts to engage people with Alzheimer’s. Today, we saw the movie, I Remember Better When I Paint, available on DVD from the Hidalgos Foundation. There are people around the US and elsewhere working with theater, dance, music, and art to engage Alzheimer’s patients.

We have a long way to go in shaping a fair and equitable national planning strategy for Alzheimer’s care. This conversation should continue.

Follow me on twitter at lauranewmanny.

Alzheimer’s Disease Issues 2011 Fellowship Begins

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I am in Washington at the National Press Foundation’s Alzheimer’s Disease Issues 2011 Fellowship with about 15 other journalists. The program runs through Wednesday. Today’s session was a half-day, with presentations by Richard Jackson, director of the Global Aging Initiative, Center for Strategic and International Studies, and Harry Johns, President and CEO of the Alzheimer’s Association.

Global Age Shift

Trends that struck me in Jackson’s global aging presentation were as follows:
1.    Falling fertility is near or beneath replacement in countries, including China, Brazil, Mexico, and Chile. In Turkey, Iran, North Africa, and Indonesia, fertility is also falling fast.
2.    Rising life expectancy is bringing added financial burdens that few developed countries can handle.
3.    As the population ages, productivity in the workforce goes down and growth slows.
4.    Savings and investment drop.
5.    As a result, families get smaller and people become more risk averse. Smaller families may find it more difficult to socialize their children to care for elders as they did traditionally.
6.    A rising share of the population does not have a child to look after them, which in my mind, puts more elders at risk of poverty in old age.
7.    Right now, Germany and Sweden look the best in terms of funded retirement savings. Germany and Japan both have mandatory long term care insurance deducted from income.
8.    There have been Draconian cuts in pensions worldwide.
9.    However, Germany stands out as one country where you don’t have to become poor to get old age/long term care.

Planning for Alzheimer’s Disease Burden in the United States

Turning to the United States, Johns compared the stigma surrounding Alzheimer’s to where cancer was in 1961, when many doctors did not tell patients about a diagnosis of cancer. He pointed out that available treatments are at best “”symptom improvers’ that don’t work for everyone and when they work, they may not work for long.”

Legislative changes at the federal level are promising, including the National Alzheimer’s Project Act (NAPA), which passed in December, as part of the lame duck session in Congress. It requires developing a strategic plan for Alzheimer’s in America, according to Johns. As part of the “Welcome to Medicare exam,” including an annual cognitive measure will be added to the annual physical.

The HOPE (Health Outcomes, Planning, and Education) for Alzheimer’s Act (H.R.5926), sponsored by the Alzheimer’s Association, is currently making the rounds in Washington. It is endorsed broadly, with bipartisan support. Change.org has a petition on the web  urging the public to sign it and “Stand with the Alzheimer’s Association and urge members of Congress to support” it.

According to Johns, the Hope for Alzheimer’s Act will encourage discussion about Alzheimer’s, promote charting in the medical record, and advance discussion about Alzheimer’s and care.

The change.org petition states: “Too many of America’s baby boomers will spend their retirement years either living with Alzheimer’s disease or caring for someone who has it. Even worse, many of the estimated 5.4 million Americans with Alzheimer’s disease do not have access to a formal diagnosis or care planning services preventing them from planning for the future. As we work for Alzheimer’s research, we must ensure individuals living with the disease have access to services that can improve their quality of life today.”

This is the second time that the Foundation has run this event, which is underwritten by Pfizer,the Lawrence B. Taishoff Endowment, and the National Press Foundation Program Fund. A few journalists and bloggers have criticized the program in the past because of Pfizer money. Pfizer is in the Alzheimer’s market so anyone could argue that in supporting an educational program on Alzheimer’s, journalists who cover Alzheimer’s information gained at the meeting, could use that information to enhance Pfizer’s market share. That’s why I am being up front about this here. According to NPF President Bob Meyers, Pfizer has absolutely no editorial impact on the program, but before the program, Pfizer receives a proposed agenda and budget.

I don’t know whether I’ll have the energy to blog every day of this meeting (it’s Alzheimer’s all day for 2.5 days ahead), but if you have any concerns about Alzheimer’s patient care, caregiver issues, or funding, please point them out in the comments.