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Aging, Health Policy, In the News, Neuroscience, Patient Care

The toll of Alzheimer’s on caretakers

The toll of Alzheimer’s on caretakers

Loving Hands Vannesa Pike-Russell FlickrMy last grandparent, my paternal grandmother, passed away earlier this year. She lived into her 90s and, like both my maternal grandmother and grandfather, she suffered mild to moderate dementia in the final years of her life. My mother cared for each of them as one by one their health declined. She had ample support from our extended family, but she was the one who had to bathe them and help them go to the bathroom or remind repeatedly them that so-and-so relative had died many years ago. My parents’ experience taking care of elderly family members who no longer had their full mental faculties lasted two to three years in each case, unlike people who care for family members with Alzheimer’s disease – a task that can last a decade or more.

Last week, Tiffany Stanley wrote a feature in the National Review about her experience caring for her ailing aunt, Jackie, who was diagnosed with early onset Alzheimer’s. Stanley’s father had been caring for his sister when his congestive heart failure made him too ill to continue, so his 29-year-old daughter stepped in. She was unprepared for the realities of caring for an Alzheimer’s patient, and she chronicles her experiences with touching anecdotes about her family’s experiences, as well as a detailed look at Alzheimer’s care in the U.S. She also details the impact the disease has on caregivers:

Alzheimer’s places a heavy toll on family caregivers. Their own health suffers. Dementia caregivers report higher rates of depression and stress than the general population. Some studies show they have an increased risk for heart disease and stroke as well as higher mortality rates. Their own use of medical services, including emergency-room visits and doctors’ appointments, goes up, and their yearly health care costs increase by nearly $5,000, according to research from the University of Pittsburgh and the National Alliance for Caregiving. “Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving,” reads an article in the American Journal of Nursing.

Stanley also writes about the tension between funding a cure – to keep people from spiraling late stage dementia – and caring for those who are already sliding down that route:

Lost too often in the discussion about a cure has been a much more basic, more immediate, and in many ways more important question: How can we better care for those who suffer from the disease? Dementia comes with staggering economic consequences, but it’s not the drugs or medical interventions that have the biggest price tag; it’s the care that dementia patients need. Last year, a landmark Rand study identified dementia as the most expensive American ailment. The study estimated that dementia care purchased in the marketplace—including nursing-home stays and Medicare expenditures—cost $109 billion in 2010, more than was spent on heart disease or cancer. “It’s so costly because of the intensity of care that a demented person requires,” Michael Hurd, who led the study, told me. Society spends up to $56,000 for each dementia case annually, and the price of dementia care nationwide increases to $215 billion per year when the value of informal care from relatives and volunteers is included.

The story is equal parts frustrating and heart-wrenching, but I came away much better informed about what a diagnosis entails, not just for the patients, but the families connected to them.

Previously: No one wants to talk about dying, but we all need to, Mindfulness training may ease depression and improve sleep for both caregivers and patients, Can Alzheimer’s damage to the brain be repaired?The state of Alzheimer’s research: A conversation with Stanford neurologist Michael Greicius and Exploring the psychological trauma facing some caregivers
Photo by Henry Rabinowitz

Ethics, FDA, Health Policy, In the News, Stanford News

Stanford experts weigh in on spate of "right to try" laws for the terminally ill

Stanford experts weigh in on spate of "right to try" laws for the terminally ill

4286759185_f958aedc10_zTerminally ill patients should be able to access medication that could help them, regardless of how far along that drug might be in the FDA‘s in-depth approval process, right? Yes, some states such as Colorado, Missouri and Lousiana have said. They’ve adopted so-called “right-to-try” laws that gives dying patients access to drugs that have passed only the first stage of the FDA approval process.

Yet these laws — which are modeled on a policy from the libertarian Goldwater Institute — are ultimately useless given that federal law trumps state law, according to Stanford scholars Patricia Zettler, JD, and Henry Greely, JD, in an opinion piece published recently in JAMA Internal Medicine. In addition, the laws are redundant, they write:

Since the late 1980s, patients with serious and terminal conditions have been treated with unapproved medical products. Following sharp criticism from AIDS access about blocking access to potentially effective, but unproved, treatments, as well as congressional intent, the FDA issued regulations that are intended to provide patients with faster access to novel drugs for life-threatening conditions… Although satisfying the agency’s requirements may, at first glance, seem onerous, in practice the FDA very rarely rejects requests for expanded access.

Zettler, who formerly worked for the FDA, pointed out a link that is telling: During fiscal year 2012-2013, the FDA received 977 requests for “expanded access” (these requests may include more than one patient, Zettler said). It approved 974 of them.

None of the state or federal laws require a drug company to provide experimental drugs, and Zettler said she knows of only one – NeuralStem, Inc., a Maryland-based company that is developing therapies for central nervous system disorders –  that intends to provide drugs under these laws. By skipping the FDA’s process, the companies risk angering the FDA, whose favor they need for their drug approval, Zettler told me.

Why then these laws, which are currently also being considered in Michigan, Nevada and Arizona?

Well, Zettler told me, they’re political no-brainers. Imagine the political rants: “So-and-so made my mom die faster,” or “Joe Baloozabum opposes dying patients” – nope, that doesn’t fly inside any Beltway. Many state politicians are also motivated by a “good faith desire to help people,” Zettler said.

But she doubts that states have the expert staff needed to evaluate drug applications. And they don’t have the legal green-light either, she said, pointing out a recent ruling blocking Massachusetts’ attempt to ban a long-acting opiod.

Zettler said the state-based debates simply add a new wrinkle to a discussion that’s been percolating for decades.

Previously: No one wants to talk about dying, but we all need to and Asking the hardest questions: Talking with doctors while terminally ill
Photo by Melanie Tata

Cancer, Global Health, Health Policy, Infectious Disease, Public Health

Treating an infection to prevent a cancer: H. pylori and stomach cancer

Treating an infection to prevent a cancer: H. pylori and stomach cancer

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The number of newly diagnosed stomach cancer cases in the United States is less than a tenth of the number of prostate cancer cases or breast cancer cases, which may be part of the reason it doesn’t get the same attention as breast and prostate cancer. But the mortality rate is much higher for stomach (or gastric) cancer. Nearly 11,000 Americans will likely die from gastric cancer this year, with only 28 percent of cases surviving five years or more. For comparison, the five-year survival rate for prostate cancer is nearly 99 percent and for breast cancer, it’s more than 89 percent.

On a global scale, an estimated 700,000 people will die from gastric cancer this year, as Stanford infectious disease specialist Julie Parsonnet, MD, and her co-authors note in a Viewpoint piece in the most recent issue of the Journal of the American Medical Association. The authors also point out that worldwide, about 77 percent of gastric cancer cases are linked to chronic infections of Helicobacter pylori, a helix-shaped bacteria that was identified in the early 1980s and found to be linked to gastric ulcers a few years later, as well as to gastritis, an inflammation of the stomach lining that is a precursor to stomach cancer.

Researchers are still trying to understand exactly how H. pylori causes cancer or even how it colonizes the gastrointestinal track – they believe it’s picked up via food or water. Until recently, there was a dearth of randomized clinical trials that looked at the effectiveness of screening and treatment for H. pylori as a method for preventing stomach cancer.

Ignoring gastric cancer in the hope that it will soon disappear is not a tenable health policy

In the opinion piece, the authors describe the recommendations of a working group that met in December 2013 at the behest of the International Agency for Research on Cancer. Taking the burden of the disease and the availability of treatment options in consideration, the group considered gastric cancer “a logical target for intervention,” according to the authors of the JAMA piece. They go on to write:

Screening and treatment for H pylori is generally acceptable and affordable. An inexpensive serological test can determine who may be infected, with a sensitivity and specificity that could be sufficient for population-based prevention programs. Low-cost treatment regimens using 2 or 3 generic antibiotics plus a proton pump inhibitor for 7 to 14 days can eradicate the infection in more than 80% of cases, depending on the antibiotic resistance patterns of H pylori within the population. Economic modeling studies indicate that H pylori screening and treatment strategies are cost-effective under a large range of assumptions about effectiveness and costs. However, the models are limited by reliance on observational data rather than randomized trial results, by a lack of information on possible adverse effects of treatment, and by limited data from lower-income countries.

Researchers still have many gaps in their understanding of the best methods to prevent stomach cancer, but several trials may answer some of those questions in the coming decade.

Stomach cancer is not the only cancer known to be linked with an infection. Doctors routinely test whether women who come in for a PAP smear are infected with the human papilloma virus (HPV), which is linked to cervical cancer. Chronic hepatitis B and C infections are known to be linked to liver cancer. In time, screening for H. pylori to prevent stomach cancer may become routine. Until then, Parsonnet and her coauthors say in their conclusion, “Ignoring gastric cancer in the hope that it will soon disappear is not a tenable health policy.”

Previously: Researchers identify potential drug target in ulcer bug that infects half the world’s population, Good-bye cancer, good-bye stomach: A survivor shares her tale and Image of the Week: Helicobacter pylori colonizing the stomach
Photo by Shuman Tan and Lydia-Marie Joubert

Health Costs, Health Policy, In the News, Media, Medicine and Society, NIH

#ACT4NIH campaign seeks stories to spur research investment

#ACT4NIH campaign seeks stories to spur research investment

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No ice buckets are involved in the latest push for investment in medical research. Instead Act for NIH: Advancing Cures Today, a Washington D.C.-based non-profit led by a former National Institutes of Health staffer, is a good ‘ol fashioned media campaign using data, stories and images, including a haunting photo of a presumably sick child captaining its home page.

The need is real. NIH funding has failed to keep pace with inflation or with investments by other nations including China. Now, only one in six research proposals, the lowest ever, are accepted, according to Act for NIH.

The campaign’s goal is simple: “We advocate an immediate, significant funding increase for the NIH, followed by steady, predictable budget growth in the future.”

Not so simple, of course, is the actual funding hike. That’s why the campaign is hunting for stories, as well as money. It urges supporters to photograph themselves besides a ACT for fill-in-the-blank poster. ACT for cancer, for hope, my grandfather, for AIDS – you name the reason to support research, action (and money) is needed.

Science released an interview with leader Patrick White today. White admitted the group lacks a formal plan, but it does have momentum, thanks to the backing by real estate developers Jed Manocherian.

It’s launch comes just in time for the 2015-16 federal budget cycle, which usually begins with the president’s budget proposal in February.

Becky Bach is a former park ranger who now spends her time writing about science and practicing yoga. She’s an intern with the Office of Communications and Public Affairs. 

Previously: How can health-care providers better leverage social media to improve patient care?, NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases and Federal investments in research and higher education key to U.S. maintaining innovation edge
Photo by Act for NIH

Clinical Trials, Ethics, Health Policy, Stanford News, Videos

Video explains why doctors don’t always know best

Video explains why doctors don’t always know best

“Over 85 percent of our major medical guideline recommendations are not based on high-quality evidence,” said Robert Califf, MD, director of the Duke Translational Medicine Institute, in an article I recently wrote for Inside Stanford Medicine.

This was the inconvenient truth that Stanford bioethicist David Magnus, PhD, had to explain to patients during focus groups, as he began developing policy recommendations for conducting ethical comparative-effectiveness research within physician practices.

“We had to dispel the myth that doctors always know which treatments are most effective for individual patients,” Magnus told me. “The truth is, in the absence of good evidence, these choices are often influenced by advertising, insurance coverage and local preferences.”

Gathering better treatment evidence is a key objective of the Affordable Care Act’s health-care reform mandate. It provides incentives for medical practices to continually evaluate the relative effectiveness of competing medical interventions as a way of delivering better, less costly care to more people. The widespread adoption of electronic medical records is enabling researchers to conduct these head-to-head comparisons in more automated ways, reducing the time and expense associated with the highly controlled clinical trials used to evaluate new drugs and devices.

A communications challenge with these new approaches, however, is how to explain the risks and rewards of participation to patients. In focus groups, Magnus found that no meaningful discussions could take place until his research team had educated patients on some fundamental concepts of medical research, such as standards-of-care, randomization and informed consent. To help with this process, his team produced three short, animated videos that would rapidly get everyone up to the same level of understanding. Magnus and his collaborators are making these videos available to all for educational purposes.

The first video, “Which Medication is Best?,” explores the influences and uncertainty associated with physicians’ prescribing preferences. “Research on Medical Practices” explains medical record reviews, study randomization and randomization of clinics and hospitals; and “Informing or Asking” describes ways to explain study participation to patients.

Magnus and his bioethicist collaborators from the Seattle Children’s Research Institute and University of Washington expect to publish their final ethics policy recommendations later this year.

Previously: Bioethicists say criticisms of preemie oxygen study could have “chilling effect” on clinical researchStanford biomedical ethicist discusses Choosing Wisely Initiative and Will new guidelines lead to massive statin use?
Videos by Booster Shot Media

Ebola, Events, Global Health, Health Policy, In the News, Infectious Disease, Public Health

Interdisciplinary campus panel to examine Ebola outbreak from all angles

Interdisciplinary campus panel to examine Ebola outbreak from all angles

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Scientists have estimated that the West Africa Ebola epidemic will take another 12-18 months to control and will infect hundreds of thousands of more people during that time. In an opinion piece published last week in the Los Angeles Times, Michele Barry, MD, director of Stanford’s Center for Innovation in Global Health, discussed how the outbreak got so out of control and explains why the “world needs a new approach to solving massive international health crises and preventing future ones.”

Tomorrow on the Stanford campus, Barry will participate in an interdisciplinary forum focusing on the health, governance, security and ethical dimensions of the epidemic. Additional speakers include Doug Owens, MD, a general internist and director of the Center for Health Policy/Primary Care Outcomes Research; microbiologist David Relman, MD, a fellow at the Center for International Security and Cooperation; Stephen Stedman, deputy director at the Center on Democracy, Development and the Rule of Law; and Paul Wise, MD, MPH, a child health specialist and core faculty member of the Center for Health Policy/Primary Care Outcomes Research. Drawing on their diverse backgrounds, the panelists will offer unique perspectives from their respective fields on the latest developments in addressing the outbreak.

The event will be held at 4 PM local time at the Bechtel Conference Center in Encina Hall and is free and open to the public. Conference organizers will also be live tweeting the panel; you can follow the coverage on the @FSIStanford Twitter feed, or by using the hashtag #EbolaForum.

Previously: Expert panel discusses challenges of controlling Ebola in West AfricaShould we worry? Stanford’s global health chief weighs in on Ebola, Biosecurity experts discuss Ebola and related public health concerns and policy implications and Stanford global health chief launches campaign to help contain Ebola outbreak in Liberia
Photo by European Commission DG ECHO

Health Costs, Health Policy, In the News, NIH, Public Health, Science Policy

Research investment needed now, say top scientists

Top scientists made the case for continued investment in basic science and engineering earlier this week by unveiling a new report, “Restoring the Foundation: The Vital Role of Research in Preserving the American Dream” by the American Academy of Arts and Sciences.

Here’s why this is important: Federal investment is needed to power innovation engines like Stanford’s School of Medicine, and if that money gets funneled to roads, the military, Medicare, or any of a variety of other uses, fewer jobs, and fewer discoveries, could result. From the report:

Unless basic research becomes a higher government priority than it has been in recent decades, the potential for fundamental scientific breakthroughs and future technological advances will be severely constrained.

Compounding this problem, few mechanisms currently exist at the federal level to enable policy-makers and the research community to set long-term priorities in science and engi­neering research, bring about necessary reforms of policies that impede progress, or facilitate stronger cooperation among the many funders and performers of research…

Stanford President John Hennessy, PhD; biochemist Peter S. Kim, PhD; and physicist (and former U.S. Secretary of Energy) Steven Chu, PhD, are among the scientific rock-stars who co-authored the report.

For an excellent piece on the political debate surrounding the report’s release, check out the coverage in Science here. NPR also recently aired a series that colorfully illustrates the effects of research cutbacks, including a piece on a patient suffering from ALS, and a profile of several underemployed scientists.

Becky Bach is a former park ranger who now spends her time writing or practicing yoga. She’s a science writing intern in the Office of Communications and Public Affairs. 

Previously: More attention, funding needed for headache care, “Bold and game-changing” federal report calls for $4.5 billion in brain-research funding, Federal investments in research and higher education key to U.S. maintaining innovation edge

Aging, Health Policy, In the News, Medicine and Society

No one wants to talk about dying, but we all need to

No one wants to talk about dying, but we all need to

“Dying in America is harder than it has to be.”

That’s the headline of one of the stories published following the release of the Institute of Medicine’s 500-page report titled “Dying in America.” The report tackles head-on the difficult topic of how to provide individualized, appropriate care for patients with advanced serious illness in a country that is grappling with out-of-control health care costs.

Patients should, and can, take control of the quality of their life through their entire life, choosing how they live and how they die

Its conclusion: The system needs a major overhaul.

“Our current system is broken,” said David M. Walker, co-chair of the 21-member committee that authored the report and former U.S. Comptroller General from Bridgeport, Conn. “It does not result in the type of quality of care that people deserve and desire and it’s much more costly. Systematic changes are needed for more compassionate, affordable care.”

No easy solutions exist, the authors said at an hour-long press conference announcing the release of the report yesterday. Instead, they plan to spend the next year getting their message out to the public with far ranging goals for change: from more comprehensive coverage of palliative care by medical insurance, to more hours of palliative care education in medical and nursing schools, to improved communication between health care providers and their patients about their end-of-life care choices – along with a payer-system that reimburses for those conversations.

It’s a controversial topic that broke out into the public debate five years ago during the passage of the Affordable Care Act, when opponents of the bill claimed that a proposal for Medicare to reimburse doctors for counseling patients about living wills and advance directives would lead to bureaucrats setting up “death panels” to determine who deserved care.

But it’s also a topic that can no longer be ignored, authors of the report said. Too many Americans are suffering unnecessarily and as the elderly population continues to grow with the aging of the baby boom generation, these problems will continue to multiply.

“For most people, death does not come suddenly,” said Philip Pizzo, MD, co-author of the report and former dean of Stanford’s medical school, in an email to me discussing the conclusions of the report. “Instead, dying is a result of one or more diseases that must be managed carefully and compassionately over weeks, months, or even years, through many ups and downs.”

Physicians and other health care professionals can provide well-rounded care at the end of life to relieve patient pain, maximize functioning, alleviating emotional stress, and ease the burden of loved ones – all in a manner that is consistent with individual choices, he said.

“Patients should, and can, take control of the quality of their life through their entire life, choosing how they live and how they die,” Pizzo said.

But it’s not happening today.

“Studies show that doctors want to die in comfort at home at the end of life, but subject patients to high-intensity ineffective treatments,” he said. “Why?”

Previously: Study: Doctors would choose less aggressive end-of-life care for themselves, Former School of Medicine dean named to expert panel to reform end-of-life care in America, Communicating with terminally ill patients: A physician’s perspective and On a mission to transform end-of-life care

Health Policy, Public Health, Stanford News

Defining a “public-health emergency” in an age of complex health threats

Defining a “public-health emergency” in an age of complex health threats

MHE_-_KBH_Brandvaesen_-_HAZMAT_3aWhen chemicals used in coal mining were spilled into the Elk River in West Virginia in January, the governor declared a state of emergency the same day. When the H1N1 influenza virus was discovered in 2009, President Obama declared a national public-health emergency. In both cases, people were willing to comply with government orders (don’t drink the water, speed up vaccine production) in order to get an impending health threat under control.

But what happens when the health threat isn’t imminent? Or if it has no clear end-point? In a perspective piece in the most recent issue of the New England Journal of Medicine, Stanford public-health law scholar Michelle Mello, PhD, JD, and her co-authors delve into just such questions. They describe Massachusetts Governor Deval Patrick’s unusual step in March to declare a public-health emergency in order to control the state’s recent opioid-addiction epidemic – 40 people had died from heroin overdoses in four months. The move allowed public-health authorities to take several steps to address the problem, including monitoring prescription use and release funds for addiction treatment. Few states have taken such drastic steps to control drug use problems, though, and it raises questions about what exactly constitutes a public health emergency. In the piece, the authors write:

Patrick’s unusual invocation of emergency public health powers, which are traditionally reserved for infectious disease outbreaks, natural disasters, or acts of terrorism, offers an opportunity to consider some important questions. Should widespread injuries, such as those caused by opiates or motor vehicle crashes, be viewed as public health emergencies? Should chronic health conditions such as hypertension or obesity be similarly categorized? When should normal lawmaking processes, and the typical rights afforded to individuals and entities, be suspended to protect public health?

Although there may be benefits – drawing public attention to an important problem, access to critical funding sources, even mustering military personnel (for example, the National Guard was deployed to deal with the Elk River chemical spill) – there are drawbacks as well. Emergency powers give the government unprecedented leeway, as the authors note, they “sit largely outside the ordinary structures of checks and balances.” The authors go on to describe some of the pitfalls of declaring public-health emergencies:

Most important, concerns about due process are amplified when emergency orders restrict individual freedoms and property rights. The notion that highly coercive measures such as mandatory blood tests, quarantines, or property seizures could be imposed for common threats without democratic procedures and full due process offends our constitutional values. The lack of clear triggering thresholds for terminating emergency powers is particularly troubling, creating the possibility that critical legal protections might be suspended indefinitely.

Government officials rarely invoke public health emergencies, partly due to their out-sized power. The authors note, though that Patrick’s invocation “sets a troubling precedent” for a power that should be used with caution.

Photo by hebster

Emergency Medicine, Health Policy, In the News, Patient Care, Research, Stanford News

Exploring how the Affordable Care Act has affected number of young adults visiting the ER

Exploring how the Affordable Care Act has affected number of young adults visiting the ER

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One of the earliest – and most popular – parts of the Affordable Care Act allowed young adults to stay on their parents insurance until their 26th birthday. This week, Stanford researchers led by Tina Hernandez-Boussard, PhD, published a paper in the journal Health Affairs that tracked emergency room visits in California, New York and Florida for two age groups: 19 to 25 year olds – the group affected by the new requirement –  and 26 to 31 year olds for comparison. The researchers examined ER visits for the two years prior to the ACA requirement (2009 and 2010) and one year after the requirement went into effect (2011). Their findings showed that in 2011, 19- to 25-year-olds had slightly fewer ER visits – 2.7 per 1,000 people -compared to the older group.

The researchers calculated that the drop in ER use means more than 60,000 fewer visits for 19- to 26-year-olds across the three states  in 2011. They also found that the  largest relative decreases in ER use were among women and blacks.

post on Washington Post‘s Wonkblog covered the study and discussed further findings:

The researchers had another finding that seems just as important. While the total number of ER visits among the under-26 group was down, about the same number of people still went to the ER. The distinction here is that young adults with chronic conditions, who have greater care needs, probably now had better access to non-ER care settings, so their number of visits to the ER decreased. But the finding also suggests that healthy young adults, who might have shunned health insurance before, still continued to see the ER as a place for seeking out routine care, according to the study. Further, insurance likely makes those ER visits cheaper, which could actually increase how much people use the ER, the researchers wrote.

Hernandez-Boussard and her colleagues concluded in their paper, “As EDs face capacity challenges, it is important to consider how to meet the broad underlying needs of young adults through other channels and ensure the needed availability of these alternative health services.”

Previously: Abraham Verghese on health-law battle: “We’ve worried so much about the process, not the patient”
Photo by Eric Staszczak/KOMU

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