Your Decisions Matter. Take Control with Advance Care Planning

April 16, 2014
9:15 am

Every year in April there is a day specifically set aside to discuss advance planning.  National Healthcare Decisions Day – today, April 16 — focuses on educating individuals on the importance of developing power –of-attorney legal documents for healthcare decisions and creating advance directives, or living wills.  Advance directives identify values and preferences that can direct healthcare professionals regarding critical care decisions in the event individuals are unable to speak for themselves. These instructions only go into effect if an individual is no longer able to make their own  decisions.

The Healthcare Leadership Council is a partner in the Coalition to Transform Advanced Care (C-TAC), a nonprofit organization that has conducted consumer research on advance planning and care for serious illness. Their Call to Action supports best practices that ensure coordinated care, empowering people to make informed choices for themselves and educating healthcare professionals to assist their patients with advance planning. They provide resources for care advocates and family caregivers as well as educators and providers.

We urge people to pay attention to the messages of National Healthcare Decisions Day and engage in their own difficult, but essential, conversations about end-of-life wishes.  It’s important for those who are knowledgeable about healthcare and health policy to lead by example and emphasize the importance of thoughtful decisionmaking about possible eventualities.  Changes in health and well-being are unplanned and uncontrollable, so it’s important to take some measure of control with advance care planning.

For more information on National Healthcare Decisions Day, please visit www.nhdd.org.

Debating the Future of Biomedical Research: A Guest Post

April 07, 2014
12:57 pm

Wing of Zock is the blog for faculty, students, administrators and other stakeholders connected to medical schools and academic teaching hospitals.  Recently, the blog carried a post that I think is well worth publishing in this space.  While a debate is ongoing concerning the value and advisability of private philanthropic investment in medical research, more attention needs to be paid to the anemic pace of federal funding for the foundational biomedical research that leads to new treatments and cures.

Ann Bonham, Ph.D, the chief scientific officer for the Association of American Medical College elaborated on this point eloquently and effectively in her Wing of Zock post.  We’re pleased to repost it here….

On March 15, 2014, The New York Times Sunday edition published a front page story by William J. Broad, “Billionaires with Big Ideas Are Privatizing American Science.” The piece drew nearly 500 comments on the Times’ website in 24 hours, debating the pros and cons of philanthropic support for research.
Philanthropic investment in research is most welcome, but I was struck that this story made the front page, over a much less flashy yet far more important story: that the nation’s entire biomedical research enterprise may be in peril from a lack of federal investment. However generous, philanthropy cannot begin to substitute for a national commitment to medical research.

Between 1998 and 2003, the federal government essentially doubled the funding for biomedical research through appropriations made to the National Institutes of Health (NIH), the largest funder of basic biomedical science in the world. That significant investment led to breakthroughs in the diagnosis or treatment of many diseases in the past decade that were derived from basic science funded, at least in part, by the NIH.

Basic science is a high-risk investment. It can be serendipitous and unpredictable, and requires a large upfront commitment of time and energy. Some of the most major breakthroughs begin with small, unglamorous steps that require unimaginable commitment of time and energy, yet can eventually result in innovative new diagnostics, treatments, and sometimes cures.

As one example, in the 1960s, Dr. Osamu Shimomura and colleagues examined the properties of bioluminescence—the biochemical emission of light by living organisms—in jellyfish. He asked the question: How do these organisms biochemically emit light? An interesting question, although it would hardly have made the front page of the New York Times, or otherwise garnered much attention. The team identified a key protein, named aequorin, and elucidated how it worked chemically to make light emission possible. The finding eventually led to the identification of “green fluorescent protein” or GFP.

Shimomura did not work alone; other investigators made critical contributions to developing GFP as a biochemical marker that makes it possible to monitor gene expression and track the resultant protein movement within individual cells. GFP is now one of the most widely used scientific tools, enabling many other remarkable discoveries of how genes, proteins and cells function in health and disease. For the development of GFP, Shimomura and others were awarded the 2008 Nobel Prize in Chemistry, nearly five decades after his original discovery.

I have previously noted my favorite example: Dr. Elizabeth Blackburn and collaborators performed experiments, more than three decades ago, on Tetrahymena (or “pond scum”), a single-celled protozoan,to answer a fundamental question: How do cells overcome an inherent biological step that shortens their DNA molecules each time the cell undergoes normal replication? Given this phenomenon, the strand of DNA could become so short with repeated cell divisions that part of the genetic blueprint would be lost, and humans would lose their ability to develop normally. Another interesting question, but the future impact on medicine and science was still to come.

As it turns out, discoveries made using this seemingly unremarkable pond-dwelling organism uncovered the existence of a protective cap on the ends of the pieces of DNA, “telomeres,” that essentially protects the DNA during cell division. That discovery triggered thousands of additional experiments in laboratories around the world that continue to this day. And because of those studies, each one building on prior work, we have an advanced understanding of cells that serves as the basis for innovative treatments for neurodegenerative disorders and cancer. Dr. Blackburn and her colleagues were awarded the Nobel Prize in Physiology or Medicine in 2009.

Those are two examples. There are thousands of others. Based on current investment trends, it is unlikely that philanthropic donors or private sector research and development would have been interested in funding the original exploratory research on pond scum. Historically, the federal government has been the primary funder of this sort of high-risk basic science, because of both the proximal outcomes—fundamental discoveries that lead to clinical breakthroughs—and the distal outcomes—a stronger, more competitive and productive nation. These basic breakthroughs taking place in laboratories across the nation, and the public support that makes them possible, rarely are covered in the news or seen in the public eye.

Despite vocal bipartisan support for fundamental biomedical research, the commitment to federal funding does not match the rhetoric. We are now in the middle of an “un-doubling” of the NIH budget. In 2014, the federal appropriations for NIH—while nominally about $30 billion—is closer to the year 2000 level ($20 billion) when inflation and costs of doing research are considered. This year’s appropriation fell far short of simply breaking even with 2012. As a result, there are far fewer NIH-funded research project grants. Some of the brightest scientists in the nation have lost federal support and are shutting down their laboratories and laying off skilled technicians, unable to support their research teams and forced to put bold new ideas on hold. Even the most committed of our younger scientists are thinking twice about beginning a career in research in the public interest. This lost momentum and collapse of research infrastructure stifles potential breakthroughs from high-risk basic science that will take decades to recover, or may not be salvageable at all.

All this leads to one question: Now what? As the GFP and pond scum stories illuminate, we can start by turning our basic science breakthroughs into headlines that will captivate the public, and better explain the time lag between discoveries and clinical translation. But most important, we should rethink altogether how Congress allocates funds for biomedical research.

Current funding for NIH is in the discretionary spending category, which makes it subject to an annual appropriations process by Congress. What if Congress, while honoring the annual appropriations process, committed to a multi-year, predictable, modest increase in funding for biomedical research? The relative risk of committing to a steadily increasing funding scheme over the current annual appropriations process, which has resulted in the sobering and unrelenting decline in federal dollars, seems quite low—especially when considering the impacts of federal support on the health of our citizens who make our nation more productive, more competitive, and more innovative.

So let’s not be diverted into arguing the pros and cons of philanthropic funding for research. Instead, let’s focus on preserving the much larger and essential public investment that saves lives.

The I’m-Rubber-You’re-Glue Approach to Medicare Discourse

April 02, 2014
5:00 pm

Mere hours after Representative Paul Ryan (R-WI), the chairman of the House Budget Committee, released his budget proposal containing a Medicare reform concept that would give beneficiaries a choice of staying in conventional fee-for-service Medicare or choosing from a number of competing private health plans, I received an e-mail from one of the several organizations in D.C. purporting to represent the interests of seniors (no, not the big one with the four letter acronym starting with “A”).

I told myself that the e-mailed statement would be a thoughtful analysis of the Ryan proposal, laying out pros and cons and encouraging a dialogue on how to build a sustainable Medicare program for future generations.

But I was just playing an April Fool’s joke on myself.

Of course, the message was full of the usual, tired rhetoric – “ending Medicare as we know it,” “allow it to wither on the vine,” “forces seniors and people with disabilities to pay more for less” – that bubbles back up every time it is suggested that Medicare may need structural change in order to avoid fiscal calamity.   It’s a little like the movie Groundhog Day, except it’s not at all funny because the Medicare trustees have told us that the program only has solvency until 2026.

This post isn’t an endorsement of the Ryan plan, but it is an endorsement of responsible, reasonable discussion about Medicare’s future.  It’s irresponsible to engage in name-calling and rhetorical mud throwing instead of substantive debate about how to place the program on sounder financial footing while providing beneficiaries with access to quality care.  It’s also a crime against accuracy to say that a premium support approach will make seniors pay more for their healthcare when the Congressional Budget Office has said that it’s possible to structure an approach that would cost both beneficiaries and taxpayers less money.

To be fair, my organization has spoken with members of both parties in the House and Senate who do, in fact, want to have this thoughtful, productive discussion.  I’m optimistic that it will happen and that we will one day see a bipartisan plan that leads to a stronger, more sustainable Medicare.  That day might come sooner if some of the opportunists in Washington start throwing ideas instead of insults.