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.

by Charles Ornstein and Tracy Weber

A version of this story was published in The Washington Post.

As the U.S. Senate Finance Committee launched an investigation Tuesday into makers of narcotic painkillers and groups that champion them, a leading pain advocacy organization said it was dissolving “due to irreparable economic circumstances.”

The American Pain Foundation, which described itself as the nation’s largest organization for pain patients, was the focus of a December investigation by ProPublica in The Washington Post that detailed its close ties to drugmakers.

The group received 90 percent of its $5 million in funding in 2010 from the drug and medical-device industry, ProPublica found, and its guides for patients, journalists and policymakers had played down the risks associated with opioid painkillers while exaggerating the benefits.

It is unclear whether the group’s announcement Tuesday evening — that it would “cease to exist, effective immediately” — was related to letters sent earlier in the day from Sens. Max Baucus, D-Mont., the finance panel chairman, and Charles Grassley, R-Iowa, to the foundation, drug companies and others.

In the letters, the senators cited an “an epidemic of accidental deaths and addiction resulting from the increased sale and use of powerful narcotic painkillers,” including popular brand names like Oxycontin, Vicodin and Opana.

The American Pain Foundation’s website carried a statement Tuesday night saying its board had voted May 3 to dissolve the organization because it couldn’t stay “operational.” The foundation did not respond to requests for comment Tuesday.

The senators are targeting a who’s who of the pain industry, seeking extensive records and correspondence documenting the links, financial and otherwise, between them and the makers of the top-prescribed narcotic painkillers.

Letters went to three pharmaceutical companies, Purdue Pharma, Endo Pharmaceuticals and Johnson & Johnson, as well as five groups that support pain patients, physicians or research: the American Pain Foundation, American Academy of Pain Medicine, American Pain Society, Wisconsin Pain & Policy Studies Group, and the Center for Practical Bioethics.

The Federation of State Medical Boards, the trade group for agencies that license doctors, received a letter, as did The Joint Commission, an independent nonprofit that accredits hospitals nationwide and made pain management a national priority in 2001.

A report by the U.S. Government Accountability Office in 2003 noted that the commission partnered with Purdue Pharma, the maker of Oxycontin, to distribute pain educational materials nationwide. The committee’s letter to Purdue noted that the company pleaded guilty in 2007 to federal criminal charges that it misled regulators, physicians and consumers about Oxycontin’s risk of addiction.

The senators requested payment information since 1997 to 10 groups and eight people, including two doctors featured in ProPublica’s December report.

They asked about any influence the companies had on a 2004 pain guide for physicians that was distributed by the Federation of State Medical Boards; on the American Pain Society’s guidelines; and on the American Pain Foundation’s Military/Veterans Pain Initiative.

In addition to citing ProPublica’s work, the letters also mention the reporting of the Milwaukee Journal Sentinel and MedPage Today.

Patients in serious pain need access to opioids, the senators wrote, but drugmakers and health-care groups “must distribute accurate information about these drugs in order to prevent improper use and diversion to drug abusers.”

“The problem of opioid abuse is bad and getting worse,” Sen. Grassley said in a statement. “Something has to change.”

Earlier Coverage:

“When it comes to these highly addictive painkillers, improper relationships between pharmaceutical companies and the organizations that promote their drugs can put lives at risk,” Baucus said in a prepared statement.

Dr. Andrew Kolodny, chairman of psychiatry at Maimonides Medical Center in Brooklyn, N.Y., and president of Physicians for Responsible Opioid Prescribing, applauded the investigation.

“These groups, these pain organizations … helped usher in an epidemic that’s killed 100,000 people by promoting aggressive use of opioids,” Kolodny said. “What makes this especially disturbing is that despite overwhelming evidence that their effort created a public health crisis, they’re continuing to minimize the risk of addiction.”

Concerns about the overuse and abuse of painkillers have intensified in recent years. As sales of the powerful drugs have boomed — rising 300 percent since 1999 — so, too, have overdose deaths.

Opioids were involved in 14,800 overdose deaths in 2008, more than cocaine and heroin combined, according to the U.S. Centers for Disease Control and Prevention.

In 2009, the use and misuse of the drugs were cited in more than 475,000 emergency department visits, nearly doubling the 2004 number, the CDC said.

Pain doctors and patient groups say that while drug overdoses are a legitimate concern, only a small percentage of deaths involves patients who receive them from their doctors. Most deaths involve illicitly obtained drugs, statistics show.

The groups also say that patients’ risk is low if they do not have addictive personalities, and that any restrictions should not punish patients who suffer from serious pain.

In recent weeks, two articles in medical journals have documented different aspects of abuse.

According to a paper published online this week by the Archives of Pediatrics & Adolescent Medicine, one of every eight high school seniors surveyed said they had used prescription opioids for nonmedical reasons.

A paper released last month by The Journal of the American Medical Association found that the rate of newborns diagnosed with drug withdrawal jumped threefold from 2000 to 2009.

And the rate of mothers using opioids at the time of delivery was five times higher in 2009. (Not all babies born to mothers using the drugs exhibit signs of withdrawal.)

Janssen Pharmaceuticals, a Johnson & Johnson subsidiary that makes the painkiller Nucynta, said in a statement that it “is committed to the responsible prescribing and appropriate use of opioid pain medications” and has supported educational websites about safe use.

The company is reviewing the senators’ letter and “will work with them to fulfill their request for information,” spokesman Mark Wolfe said via email.

Purdue Pharma acknowledged in a statement that it had received the letter, was reviewing it and looked forward to “cooperating with the committee on this matter.”

Endo did not return a request for comment. A spokeswoman for The Joint Commission said the group had just received the senators’ letter and had no comment yet. The Federation of State Medical Boards responded but did not offer immediate comment.

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Of the 103 who received prescriptions last year, 94 are known to have died. Seventy of these died after taking the medication. Nineteen died without taking the medication. In five deaths, it is not known whether or not they took the medication. For the remaining 9, it is not known if they have died.

Under the Act, physicians can prescribe–but not administer–lethal doses of medications to adult Washington State residents with terminal illnesses who are expected to have no more than six months to live.

Of the 70 patients who died after taking the medications, 93 percent were at home and 83 percent were enrolled in hospice care at the time.

Number of Death with Dignity Participants and Known Deaths, 2009-2011

Participation in the program increased 16 percent in 2011 from 2010.

Under Washington’s Death with Dignity Act, the Department of Health collects information from patients and providers who choose to participate, monitors compliance with reporting requirements, and produces an annual report.

Among the findings for 2011:

• Those who died were between the ages of 41 and 101.

• More than 90 percent lived west of the Cascades.

• 78 percent had cancer.

• 12 percent had neuro-degenerative disease, including Amyotrophic Lateral Sclerosis (ALS).

• 10 percent had other illnesses, including heart and respiratory diseases

Of the 94 participants in 2011 who died, their end-of-life concerns include:

• Loss of autonomy, 87 percent

• Loss of dignity, 79 percent

• Loss of the ability to participate in activities that make life enjoyable, 89 percent

Since the law went into effect in 2009, 255 terminally ill patients have received the prescriptions.

To learn more:

• Read the report (http://www.doh.wa.gov/dwda/forms/DWDA2011.pdf)

• Additional information about the Washington State Death with Dignity Act (http://www.doh.wa.gov/dwda/) is on the agency website.

End of life resources

• Washington State Living Will Registry: www.doh.wa.gov/livingwill.
• AHRQ: Advance Care Planning: Preferences for Care at the End of Life.
• American Bar Association’s Commission on Law & Aging: Consumer’s Tool Kit for Health Care Advance Planning.
• Aging with Dignity: Five Wishes.
• National Hospice and Palliative Care Organization: Caring Connections.
• AARP: Advance Directives – Planning for the Future.
• AARP: Talking about your final wishes.
• National Long-term Care Ombudsman Resource Center: Helpful Contacts.
• Washington State Hospice and Palliative Care Organization: www.wshpco.org.

By Sarah Barr

Higher U.S. spending for cancer care pays off in almost two years of additional life for American cancer patients on average compared to their European counterparts — a value that offsets the higher costs –according to a study in the April issue of the journal Health Affairs.

While previous studies have suggested U.S. cancer patients have better survival prospects than their European counterparts, the researchers wanted to examine whether those prospects justify higher U.S. costs.

To do so, they translated the longer lives of U.S. patients into dollar amounts using a conservative estimate of the value of a human life year — in the context of the tradeoffs people are willing to make to reduce their risk of death — and compared those amounts to U.S. spending on cancer care.  The method does not take into account quality of life or individuals’ earnings.

“We found that the value of the survival gains greatly outweighed the costs, which suggests that the costs of cancer care were indeed ‘worth it,’” the researchers wrote in the study. They cautioned the findings do not prove that all treatments are cost-effective or a that a causal link exists between spending on cancer care and survival gains.

Michael Eber, a senior analyst at Precision Health Economics, a health care consulting company, and a co-author of the study, said that the findings point to the need for further research into what drives the survival differences between U.S. and European patients.

“It calls for a closer look at the value of individual treatments and interventions,” he said.

For the study, the researchers looked at the survival outcomes for U.S. patients compared with those from 10 European countries and found that for most cancer types, U.S. patients lived longer.

Specifically, from 1995 to 1999, U.S. patients lived an average of 11.1 years after diagnosis, while European patients lived 9.3 years.

The researchers used those numbers as a baseline and based their findings on how survival gains improved in each country over time.

They also found that from 1983 through 1999, U.S. spending increased from $47,000 to $70,000 per cancer case, while in the 10 European countries, spending on cancer care increased from $38,000 to $44,000 per case.

The additional U.S. spending during that time period on the kinds of cancer the researchers examined totaled $158 billion.

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.

Seniors Need To Reevaluate Their Needs For Popular Medical Treatments

A KHN Interview

By Judith Graham

This story was produced in collaboration with 

Nortin Hadler, a professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill, has been warning for years about the lack of evidence supporting many popular medical treatments and tests.

His work is controversial. In books such as “Stabbed in the Back: Confronting Back Pain in an Overtreated Society” and “Worried Sick: A Prescription for Health in an Overtreated America,” Hadler argues for holding medical interventions to a high standard: Do they reduce mortality or substantially lessen the burden of illness? Do potential benefits significantly outweigh potential harms? Unless research proves this, the interventions should be avoided, Hadler insists.

In his newest book, “Rethinking Aging: Growing Old and Living Well in an Overtreated Society,” the 69-year-old Hadler turns his attention to older Americans and the challenging medical decisions they face

Hadler’s conversation with Judith Graham has been edited for clarity and length.

Q: You’ve called your book “Rethinking Aging.” What do you want readers to understand about aging?

A: This book is a celebration of the fact that the baby boomers and the traditionalists — the generation that came before the boomers — are the first in the history of the world to hit age 60 and to be able to say, rationally, “What do I want to do with the next 25 years of my life?”

We shouldn’t worry so much about what will kill us; instead, we should be focusing on making it to age 85 and having a pleasing journey along the way.

Q: You’re concerned about the medicalization of aging. Explain why.

A: You can be healthy well beyond 60, but you’ll be different than you were when you were 20. You’ll have different posture, wrinkles and a lot of other changes that are less obvious but age appropriate.

We have to be very, very careful about calling any difference from when we were younger an illness or a disease.

And we have to be even more careful about telling people that we have things we can do to “fix” these differences, but this happens all the time. That’s the medicalization of aging.

Q: What’s the alternative?

A: Helping people understand what’s normal for their age and how to accept and adjust to those normal changes.

Q: You talk a lot about the importance of older people making informed medical decisions.

A: For the first time in the history of medicine, we have a tremendous amount of information about efficacy: what makes sense to do medically and what doesn’t.

What I want to teach people is that it’s perfectly appropriate for patients to ask their doctors, “How certain are you that what you are offering me will produce meaningful benefits? What does the evidence show about the possibility of harm?”

Q: Can you suggest some other questions people might ask?

A: People should want to know the likelihood that death will be postponed by doing something. What is the likelihood of the same outcome, or close to the same, if one doesn’t have the treatment? Out of every 100 people, how many are helped by this intervention?

Q: What about people who face really serious, life threatening illnesses?

A: You want to know whether a proposed intervention will be effective given your context: your age, your degree of frailty, other illnesses that you have. How much benefit will you get: an extra three months, an extra year? If it’s a year, what kind of year will it be? Will I feel absolutely awful? What will the quality of my life be?

I once took care of a very, very famous physician. He was an octogenarian with heart disease, but he was very active and sharp as a tack. Well, he found out that in his belly was an expanding aortic aneurism – a surgically treatable potential killer.

He and I had multiple conversations about what to do and each time he would say, “I’ll be damned if I let them do surgery on me.”

He knew there was a high risk of surgical mortality because of his age and his frailty. He knew that urological complications were almost guaranteed and cardiac complications were probable. He didn’t want to try to live through that.

And he didn’t have to because he died of a stroke, unrelated to the aneurism, several years later.

Q: What about common problems like lower back pain? You say surgical treatments aren’t effective. But what are older people supposed to do?

A: I’m not belittling the pain. In many cases, however, it will resolve over time without medical interventions. The job of the doctor, once the doctor does an exam and realizes there isn’t something extraordinary going on, is to help people deal with the discomfort to minimize suffering.

The most effective way to do that is not with surgical violence or even with powerful pills. The doctor helps the patient adapt and address the contextual issues in their life that might interfere with coping while they wait for healing.

Take an older woman who comes in complaining of knee pain. There are no surprises on examination. She’s been your patient for a long time; you know her husband died recently. In our culture, we are primed to assume that the knee pain is interfering with coping with her loss. Science suggests the opposite: the grieving makes the knee pain seem more intense.

With time and trust, a physician can help a patient see this clearly and discover coping skills in the process. Pills, arthroscopy and surgery are missing the forest for the trees.

Q: You have very strong and controversial opinions about medical procedures commonly performed on older adults — without adequate justification, you say. Which would you put at the top of the list?

The first would be interventional cardiology and cardiovascular surgery for coronary artery disease. This includes coronary artery bypass surgery, angioplasties and stents. These were designed to spare one from fatal and nonfatal heart attacks.

I think these procedures should not be done. We have multiple trials comparing doing them versus taking care of people conservatively, and these studies show that essentially no patient is advantaged by these interventions.

The second would be arthroscopic surgery for knee pain. Again, studies show that patients gain no advantage from arthroscopic surgery.

They do as well, even better, with appropriate exercise, a little Tylenol, a supportive community and patience. But going the nonsurgical route calls for coping skills, which many physicians don’t even talk about with older patients.

Q: One of your chapters is called “decrepitude.” How do you define that?

I think of it as gray hair of the musculoskeletal system and other parts of the body. There are many age-dependent changes that increase the challenge of doing things physically.

My question is: Do we want to call gray hair a disease or do we want to reframe this period as an essential time of life? I want to reframe it by talking about what we can do to circumvent limitations and how to cope when we can’t.

We’re taught and marketed that all changes in appearance and in function in older people are forms of disease that demand treatment.

But often, that isn’t true. Much that is termed a disease is a normal aspect of this time of life and needs to be viewed as such. Sure, there are challenges, but we’re less inclined to label life challenges as diseases in other phases — puberty for example.

We need to examine our preconceptions in open dialogue with our physicians and others in our community.

Q: In the next chapter, “frailty,” you say this chapter of life has joyful features. What do you mean by this?

A: Frailty is a challenging time, but in caring for the frail, we can be enlightened about what it means to be human. There’s an awful lot that you can learn from frail people. Children feel it more quickly than we do because we’re too busy to really pay attention.

Of course, there are elements of frailty that can take away humanity. Dementia is an example of that. But generally, there is no reason to warehouse the frail, not to talk to the frail, not to be loved by the frail.

They may not be the people they once were, but they are human beings and there is great value to be found in them.

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.