H A B 1 H r M d e o HEALTH ADVOCACY BULLETIN a d n e l The Journal of the Health Advocacy Program at Sarah Lawrence College r t x a e h E v d s i A OLUME UMBER ALL s V 16, N 2 F 2009 l W l S d e a e , v A r y N o v c Y i Letter from the Director a c e c 1 y 0 R L 7 P The temperature really gets elevated For the most part, the study of the effec- e By Laura Weil 0 r q 8 when there’s talk about mandated rather tiveness of treatments has been grounded o u - T g 5 e he current health care reform debate than recommended clinical guidelines (buried?) in the race to find new drugs and r 0 s a t 9 has created interesting collisions of based on comparative effectiveness devices to bring to market. The incremental m e 9 H d Topinion. Here’s one that’s perhaps research, and about value-based purchasing gains in life expectancy or time to disease unexpected: there is resistance to finding that might limit access to exorbitantly progression as measured in clinical trials of out which medical treatments actually expensive treatment that has no greater new patentable treatments has been pretty work best. benefit than less pricey alternatives. much the only measure of how well some- There are those who are opposed to thing works. There has been little assess- A engaging in what’s being called comparative “...the study of the effectiveness of ment of whether that extra month gained effectiveness research — determining the rel- treatments has been grounded was worth the misery of toxic effects of ative efficacy of treatments and drugs devastating chemotherapy. And pharma- D (buried?) in the race to find new drugs w already on the market. Wouldn’t we want to funded clinical trials really have no incen- know what treatments work best? And tive to publicize that an older drug (maybe w and devices to bring to market.” wouldn’t we want to take advantage of that off patent, maybe cheaper) is actually better w V knowledge to provide people with the best But clearly we need to do something to than some new investigational agent. So . s and least dangerous treatments for diseases? get the U.S. health care system out of the pit those results don’t necessarily get much l c Apparently, some people don’t think so. of being 37th on the World Health press. There’s little incentive to study O . e Opponents have raised the flags of one-size- Organization’s ranking of overall health which of the dozens, sometime hundreds, d fits-all medicine, of limitations on physi- care, despite being by far the most expen- of FDA approved treatments for a particu- u cians’ autonomy to prescribe and of denying sive system in the world. lar indication work best. Certainly no drug / C h patients choices and treatment options. We Why, one might ask, hasn’t comparative company would finance such a trial unless e are so caught up in the American ideal of effectiveness research been done before? In it was absolutely sure its drug would win. a self-determination that we are threatened by a system where the provision of health So effectiveness research has been limited l t the idea of “standardized care” or that we A services is driven by market forces, there’s for the most part to those new drugs for h might be forced to use the best, safest, most been little incentive. This has been exacer- which there’s a marketable and profitable _ a effective treatment for a disease. What’s at bated by the insulation of the consumer application. d issue here is that the best treatment might from the cost of health care services. In the What we have not done in any systemat- C v sometimes be the cheapest, or the oldest or past, we didn’t know what services and ic way is an evaluation of whether what we o not the new drug that “Bob’s cousin got.” drugs actually cost if the fees didn’t come call the “standard of care” for many dis- c a We’d rather be swayed by glitzy advertising out of our personal pockets. Who cared that eases or conditions is really the best way to Y c and bragging rights to “the newest” thera- the new antibiotic cost 20 times more than treat it. That’s why “standard of care” in the y pies than by having evidence that deter- the generic drug that would have worked U.S. varies by geographic region. And cer- mines what actually works best. just fine? tainly there has been little or no research into best treatments for those rare and B orphan diseases where the market is just too small to attract the interest of pharmaceuti- In This Issue cal companies. Now that federal money has U Letter from the Director ........................................................................................1 been designated via the American Recovery Letter from the Editor............................................................................................2 and Reinvestment Act of 2009, comparative effectiveness research will be funded to the L Student Fieldwork..................................................................................................3 tune of $1.1 billion and we may finally get From Patient to Patient Advocate at Dartmouth-Hitchcock Medical Center ...3 impartial and concrete information to help L On the Frontline in the “War of Words” Over Health Care Reform...........4 us make truly informed decisions about African Services Committee and Their Clients: Health-Motivated, treatment options. E Self-Motivated ...................................................................................................5 The advocacy piece in all of this is com- Opportunities for Advocacy with Adolescents..............................................6 plicated. Health advocates have a macro T obligation to consider the best use of limit- Developing Resources for Patients with Breast Cancer................................6 ed resources as measured in spendable On My Way...A LEND Fellow Experience.......................................................8 health care dollars. We also have an obliga- I HAP Professional Development Series: Social Return on Investment...........9 tion on the micro level to protect an indi- N Faculty News ........................................................................................................10 vidual patient’s autonomy and to support Using Patient Voice to Construct an Emergency Medicine Clerkship .....10 the personal choices she or he might make Faculty Profiles: Christobal J. Jacques and Jennifer Buckley.........................11 in deciding about treatment options. The The MA in Health Advocacy Program is supported by: The Fund for Sarah Lawrence Continued on page 2 Letter from the Editor Student Fieldwork By Barbara Robb policy for HealthBeat. Celia Bertuzzi was a General Hospital and Susan Kingsbury From Patient to Patient Advocate at LEND Fellow, advocating for full inclusion was a patients relations intern at his issue of the Bulletin focuses on stu- of people with developmental and related Dartmouth-Hitchcock Medical Center in Dartmouth-Hitchcock Medical Center dents in the Health Advocacy disabilities. Shannon Irey worked with the New Hampshire. Program. We’ve asked some of them to African Services Committee, an organiza- HAP faculty continue their own advocacy T By Susan Kingsbury night in the fall of 1998. In the following (along with 30 other new employees and write about their fieldwork experiences. tion in Harlem that provides services to work. In this issue, we include an abstract of years, I continued to be seen there for outpa- summer interns) and from then on was Health care reform, the rights of patients with immigrants. Ashley Gephart worked for a presentation by Constance Peterson, who ucky me. I got to spend six weeks of a tient care. Without exception, the care from accepted as a professional equal. I was disabilities, health care for immigrants, ado- the Adolescent AIDS Program at created an emergency medicine clerkship beautiful summer working indoors, critical to follow-up was supportive and entrusted with access to the patient database lescent health, HIV/AIDS, breast cancer, hos- Montefiore Medical Center. (And Ashley program at NewYork-Presbyterian Hospital. full time, for no pay. It was one of the compassionate. and offered free rein to explore “anything pital care—these are some of the major topics Fletcher worked on HIV/AIDS outreach, Our newest faculty member, Christobal L most valuable experiences of my life. In my An earlier misdiagnosis elsewhere had led that will help you during your fieldwork in health care today. And all are fields where testing and education among adolescent Jacques, is an advocate for people with fieldwork at the Dartmouth-Hitchcock to a need for self-advocacy for appropriate here.” I met with the Center for Shared HAP students worked in the past year. women through Project KISS at NewYork- HIV/AIDS. Jennifer Buckley has also joined Medical Center, I had a chance to make a attention and treatment. Well into recovery at Decision-Making, CHaD and the Boyle Naomi Freundlich found herself in the Presbyterian Hospital.) Deborah Teevens the HAP faculty, as fieldwork coordinator. difference in people’s lives. I gained advo- DHMC, and reflecting on that experience, I Community Pediatric Program, the breast midst of a “war of words” about health care Gangl did an internship at the Gillette cacy experience in the patient relations mentioned to one of the specialists who treat- cancer support office and the palliative care reform while writing a blog about health Breast Cancer Center at Massachusetts department and facilitated illness narrative ed me that I would like to advocate for other coordinator/chaplain at the Norris Cotton workshops. patients The doctor referred me to the care Cancer Center, and I accompanied a social Located in The Upper Valley carved by the management team director, who told me that worker on a house call to arrange an elderly Connecticut River that runs between New only with credentials could I be a paid patient couple’s Medicaid participation.