The Obama administration is moving forward with an ambitious, fast-moving agenda to improve the treatment of Alzheimer’s disease and unlock a method to prevent it by 2025.

The final draft of the plan, released today, also sets up a wide-ranging effort to improve the care that Alzheimer’s patients receive and support families.

I am not alone – alzheimers.gov

As many as 5.1 million Americans are diagnosed with Alzheimer’s disease, and that number could more than double in the next few decades, said Health and Human Services Secretary Kathleen Sebelius when she unveiled the plan at a National Institutes of Health summit on Alzheimer’s-related research.

The majority of the plan’s expected funding – $130 million over the next two years – will go toward NIH research, but another $26 million will go toward Alzheimer’s care and public awareness.

Chief among those is a government website, alzheimers.gov, also launched Tuesday. The site serves as a “one-stop shop,” Sebelius said, for patients and their families.

It features information on Alzheimer’s diagnosis, caregiver support, insurance coverage and clinical trials for new treatments.

A radio, TV and print campaign will promote the site beginning this summer and encourage families to plan ahead for the care of their loved ones.

The site will also serve as a resource for health care providers, featuring up-to-date information on how to diagnose and treat Alzheimer’s.

Secretary Kathleen Sebelius

Sebelius noted that the health law requires Medicare providers to check patients for cognitive impairment during annual wellness visits, but it will be increasingly important for all providers to have guidelines for Alzheimer’s diagnosis and to look for signs of illness prior to age 65.

The online resources will complement several on-the-ground initiatives. Grants are being awarded this summer to educational centers that work with geriatricians, nurses and others to develop new curricula and training programs.

Sebelius said that the administration’s goal is to “improve the care, immediately, that people with the disease receive.”

In addition, the administration plans to evaluate how Alzheimer’s patients fare within new health care models, like the medical homes and accountable care organizations being promoted by the health law.

Reviews will focus on changes in patients’ cognitive function and on the efficiency of services provided. Work on that front is projected for completion by the end of this year.

It will take much longer, though, to find new treatments, or even a preventive treatment, for Alzheimer’s. NIH Director Francis Collins said Tuesday that study of the disease is “at an exceptional moment.”

He went on to announce two major research grants: one will evaluate a nasal spray that could improve patients’ brain function; the other will test a preventive medication among a large family in Colombia whose members have a genetic predisposition to Alzheimer’s.

Know where to turn: alzheimers.gov

The national plan for Alzheimer’s has been through several months of development since President Barack Obama signed the National Alzheimer’s Project Act in January 2011.

Funding, however, remains an issue. The administration announced in February it would devote $156 million over two years to the national plan.

Immediately, $50 million of already available NIH funds were transferred to Alzheimer’s-related projects. Another $80 million was requested as part of the president’s Fiscal Year 2013 budget, which has yet to be passed by Congress.

Much of the $26 million going toward Alzheimer’s care and awareness is also awaiting approval.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Mother Jones: Santorum In ’93: More Government Needed in Health Care

Rick Santorum (Photo: Gage Skidmore)

If elected president, Santorum vows, he will end the “tyranny” of President Obama’s Affordable Care Act. Yet as an up-and-coming congressman in the early 1990s, Santorum took a much different line. Then—like now—health care was one of the nation’s most divisive issues. In 1993, Republicans were up in arms about a health care reform bill spearheaded by Hillary Clinton and pushed by President Bill Clinton. … During that fiery debate, Santorum said it would be a mistake to allow the delivery of health care services to be determined only by the market. He asserted that Republicans were “wrong” to let the marketplace decide how health care works. He instead argued that government should play a “proactive” role in shaping the health care marketplace “to make it work better” (Andy Kroll and Tim Murphy, 3/5).

The Atlantic: Making The Best Of What Is Often The Very Worst Time Of Our Lives (Book Excerpt)

As difficult as things are now, these may turn out to be the good old days. How we die is already a public health crisis, and care for people through the end of life is poised to become a generation-long social catastrophe. … Very soon, for the first time in human history, older people will outnumber younger people on our planet. In the United States, one in five adults is 65 or older. … Those of us who are concerned about long-term care have good reasons to worry. The nursing homes of the future — our future! — may make today’s nursing homes look like luxury hotels. It doesn’t have to turn out that way (Ira Byock, 3/7).

American Medical News: Legal Risks Of Going Paperless

System breaches. Modification allegations. E-discovery demands. These issues are becoming common courtroom themes as physicians transition from paper to EMRs, legal experts say. Not only are EMRs becoming part of medical negligence lawsuits, they are creating additional liability. … Studies are mixed about how EMRs will impact liability for physicians. … Whatever the future holds for EMRs, it’s important that doctors reduce their liability risks during system implementation, legal experts say. Being aware of potential legal pitfalls prevents doctors from falling victim to technology intended to do good — not cause hardship (Alicia Gallegos, 3/5).

The Daily Beast: Talking About Sex Is the Only Way To Stop HIV

[The United States has] been stuck at about 50,000 new infections each year for more than a decade. Compared with the challenges facing places like sub-Saharan Africa, our failure is particularly galling: we have plenty of drugs that work, the money and systems to administer them, and effective, if not particularly popular, ways to interrupt the spread (condoms, clean needles, abstinence). So why aren’t we doing better? The answer is blindingly simple: sex. Almost all HIV in the U.S. is spread by sexual intercourse, yet when faced with this fact, we act like a bumbling junior-high-school kid hearing about the birds and the bees for the first time. As a result, we have before us an unabated 30-year epidemic of a sexually transmitted disease (Kent Sepkowitz, 3/5).

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

The Daily Beast: How Karen Handel’s Komen Resignation Boosts Her Political Prospects

Even if you put politics and ideology completely aside, Karen Handel had to resign from Susan G. Komen for the Cure. It’s hard to think of the last time an employee did so much damage to such a respected brand in so little time. … But while Komen will sustain long-term damage, Handel probably will be just fine. Yes, she’s lost her position as Komen’s vice president for public policy. But Handel has long had political aspirations, and she’s now a right-wing cause célèbre. When she ran for the Georgia Republican gubernatorial nomination two years ago, she was attacked for being insufficiently anti-abortion. That’s unlikely to happen again. “It’s kind of hard to criticize her now,” Joel McElhannon, a Georgia-based GOP strategist, told the Associated Press (Michelle Goldberg, 2/8).

TIME: New Criteria May Change Alzheimer’s Diagnosis

Recently revised guidelines for diagnosing Alzheimer’s disease would reclassify nearly all patients who are currently diagnosed with mild or very mild Alzheimer’s as having mild cognitive impairment (MCI), a new study finds. The change may be confusing for doctors and misleading for patients and their families, says Dr. John Morris, a neurologist at Washington University in St. Louis. Reporting in the journal Archives of Neurology, Morris finds that 99.8 percent of patients now diagnosed with very mild Alzheimer’s dementia would actually be considered to have MCI, according to the latest guidelines. Among patients with mild Alzheimer’s, 92.7 percent would be reclassified as having MCI (Alice Park, 2/8).

KHN summarized other news coverage on Alzheimer’s this week: Obama Administration Pledges $156 Million For Alzheimer’s Research And Care (2/8).

American Medical News: The Limits Of Treating Loved Ones

It was a busy day for the cardiologist. Between juggling patients, he received a phone call from his mother. She said she had heartburn and complained that none of the usual over-the-counter medications had helped. So the cardiologist quickly called in a prescription for her for an acid blocker and went back to seeing patients. Later that afternoon, his mother called again — this time from an emergency department. The doctors there said she had a heart attack. … Professional ethics policies have long warned about the perils of physicians treating themselves or family members. … Yet medical board officials say such rules are commonly violated by well-meaning physicians, either knowingly or unknowingly (Carolyne Krupa, 2/6).

Scientific American Mind: Thinking About Mortality Changes How We Act

The thought of shuffling off our mortal coil can make all of us a little squeamish. But avoiding the idea of death entirely means ignoring the role it can play in determining our actions. Consider the following scenario: … It’s the middle of the night when you are suddenly awakened from a deep sleep by the sound of screams and the choking smell of smoke. … [S]ome thoughts of death shore up our beliefs, and other types of reflection make us reexamine them. Which kind leads to a better life? For their experiment, Blackie and Cozzolino recruited volunteers aged 17 to 76 and primed them in different ways (Wray Herbert, 2/6).

The New Yorker: Out The Window

Today is January, midmonth, midday, and mid-New Hampshire, and the writer sits in his blue armchair looking out the window. He is eighty-three. He teeters when he walks, he no longer drives, he looks out the window and watches birds come to his feeder. … The cow barn forty yards away was built in 1865, and he gazes at it every day of the year. His mother turned ninety in the Connecticut house where she had lived for almost sixty years, and she spent her last decade looking out the window. She died in a nursing home one month short of ninety-one. A year later, Jane, the writer’s wife, at forty-seven, was dying of leukemia (Donald Hall, 1/23).

Newsweek/Chicago Tribune: Life With Trig: Raising A Special-Needs Child

Families of children with special needs are bonded by a shared experience of the joys, challenges, fears, and blessings of raising these beautiful children whom we see as perfect in this imperfect world. … When I discovered early in my pregnancy that my baby would be born with an extra chromosome, the diagnosis of Down syndrome frightened me so much that I dared not discuss my pregnancy for many months. All I could seem to muster was a calling out to God to prepare my heart for what was ahead. My prayers were answered beyond my shallow understanding of what true joy could be (Sarah Palin, 2/9).

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

By Caroline E. Mayer

Determine if you qualify financially

Washington state has prepared a guide to buying long-term care insurance

Don’t buy if the out-of-pocket cost for the coverage would be more than you can afford. Consumer Reports advises people that if their net worth, excluding their home, is below $300,000, long-term care insurance is not a good buy for them.

The National Association of Insurance Commissioners also recommends that consumers spend no more than 5 percent of their income on a long-term care policy.

If you need long-term care but have few financial resources, Medicaid should quickly kick in to pay, although that will probably limit your choices for care.

On the other hand, if you have a lot of resources (some financial advisers put that threshold at $2 million), you may be able to self-insure and pay the costs as they arise, thereby eliminating the need to buy a policy.

Shop around.

Unlike car insurance where you can switch carriers easily, it can be expensive to change long-term care policies because the premiums increase as you age and you lose the investments already made. Comparison shopping is critical.

Some companies and associations (such as alumni groups and AARP) offer group policies with relatively liberal eligibility, making it easier to obtain coverage if the policyholder has any health issues.

However, these policies may have more limited benefits than individually purchased plans.

If you are young or in excellent health, a group plan may also be more expensive; you may end up paying more to subsidize your less healthy peers.

And if you are certain you want LTC insurance, the younger you are, the better. Your annual premiums will be smaller, and you have less chance of being denied for health reasons.

Know what’s covered.

Policies differ greatly so know what you are buying:

• What services are covered?
• How long is the disability period before benefits kick in and what happens if you move from one facility to another?
• How much does the policy pay per day for nursing home care, home-health care and assisted living?
• How long will benefits last?
• Is there an inflation adjustment that anticipates rising medical costs as you age?
• How long are benefits extended (one, three or five years, or indefinitely)?
• Who determines benefit eligibility — your doctor, or the insurance company’s doctor — and on what basis?
• Are preexisting conditions excluded?
• Does the policy cover mental or nervous disorders, alcoholism, drug abuse or self-inflicted injuries?

The National Association of Insurance Commissioners advises consumers to look for policies that include at least one year of nursing home or home health care coverage, including intermediate and custodial care; coverage for Alzheimer’s disease; inflation protection; a guarantee that the policy cannot be terminated because you get older or your health deteriorates; no requirement that the beneficiary has to first be hospitalized to receive benefits and a 30-day cancellation period after purchase.

Check out the insurance company.

Review a carrier’s record with your state insurance commissioner’s office. Find out how long it has been in business its complaint record and history of raising rates. Stick with a company that has an A financial rating.

Also, the National Association of Insurance Commissioners and the American Association for Long-Term Care Insurance have consumer guides on their Web sites.

The Department of Health and Human Services provides extensive information on it’s website, longtermcare.gov.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Researchers share data to tackle Alzheimer’s disease

Researchers who usually keep their findings secret until they are ready to publish their research are freely sharing their data as part of a initiative to find effective Alzheimer’s treatments, writes Gina Kolata in today’s New York Times.

“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

To learn more:

• Read Kolata’s article: Rare Sharing of Data Leads to Progress on Alzheimer’s.

Seattle family copes with child’s relentless, incurable brain disease

Seattle Times health reporter Carol Ostrom profiles a family with a daughter born with a rare metabolic disorder called Sanfilippo syndrome.

Typically, children with the rare disorder die before their late teens after a relentless degeneration robs them of their cognitive functions, their ability to talk, walk and even chew. There is no treatment.

Ostrom describes the family’s years of uncertainty due to repeated misdiagnoses of their daughter’s condition and their efforts to help researchers find effective treatments.

To learn more:

• Read Ostrom’s article: Local family struggles with Sanfilippo.
• Read the MedlinePlus article on Sanfilippo syndrome.
• Visit the National Institute of Neurological Disorders and Stroke’s webpage on Sanfilippo and related mucopolysaccharidoses syndromes.

Battle for beds in southeast King County

Rob Carson, staff writer for The Tacoma News Tribune, reports on the PR battle over who gets to expand and add hospital beds in southeast King County.
Carson writes:

Tacoma’s giant MultiCare Health System, locked in a struggle with Auburn Regional Medical Center and Valley Medical Center to expand in the rapidly growing area, has pulled out all the stops with its public-relations machine.

The prize?

What’s at stake in the competition is access to thousands of underserved patients who live west of Interstate 5 and north of the Pierce-King county line.

To learn more:

• Read Carson’s article: Battle for Beds: Tacoma’s MultiCare vying for SE King County bed spaces.