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Stomping the Hill for Health Care Reform With the Genetic Alliance

Posted Oct 13 2009 10:05pm

They may not have the $300 million or so that health care lobbyists have been spending on getting their opinions heard, but Genetic Alliance has plenty of experience speaking to members of Congress.  The Alliance also helped get pivotal genetic non-discrimination legislation (GINA) passed, which suggests a respectable amount of clout.  So, when I saw the announcement for their “Genetics Day on the Hill” event, I could tell it was a unique opportunity and I signed up.  The Alliance does most of the hard work on this program, setting up a full day of meetings in congressional offices for anyone who attends.  All you have to do is talk persuasively to the people you meet. Capitol Hill Small

The fact that health care reform has become the topic of the moment, and is clearly a defining issue for the Obama Administration, made it that much more intriguing to participate.

Room with a View

On the morning of July 16,   I joined more than 90 other determined constituents at the Reserve Officers Association on One Constitution Avenue in Washington D.C., which is steps from the Senate and a brief walk to the House offices: You know you’re in the thick of it when you can see the Capitol from the ladies room.

The group first congregated at tables according to our home states to mull the information packets and find out who we’d be meeting that day. I’m currently a registered voter in Massachusetts.  I ended up in a group that was composed mainly of employees from Genzyme Genetics – one of the few drug companies in the world that makes medicines to treat rare diseases.  Our itinerary included visits to the offices of Senator John Kerry, and Representatives Michael Capuano, Bill Delahunt, Edward J. Markey, and Niki Tsongas:  All are Democrats.

After a healthy breakfast, we got our marching orders from Andria Cornell, the Alliance’s uber organized Advocacy and Health Policy Coordinator, and some words of advice from CEO Sharon Terry.

“Share your story,” Terry urged us, “And just make three points in each meeting.”

It’s important to note that the Alliance isn’t asking for specific reforms, rather, they have carefully crafted a set of  “principles” they are asking legislators to “keep in mind” while considering any health care legislation.  Congress likes to write the legislation themselves when it comes to something as huge as health care, and with all the bills floating around it would probably be a waste of time to throw another one out there anyway.

The Genetic Alliance is an unusual type of organization. It is a network of about 10,000 health care groups, about 1,000 of which advocate for patients with specific diseases.  The group has about 150 million members in total, and provides a range of services (e.g. a biobank ) and many information resources on issues like fundraising, building a website, or education about genetics. About 25 million of its members are Americans who have a genetic disease or their family members. They are passionate, deeply invested, and highly opinionated about what kinds of fixing the health care system needs.

To craft their principles, a month earlier the Alliance had joined with several other health care groups and convened an “urgent meeting” on health care reform.  BIO (Biotechnology Industry Organization), the Coalition for Affordable Health Coverage, the Coalition for 21st Century Medicine, FasterCures, Inspire, and Research!America, which co-led the event, were represented.  Ideas generated at the meeting were also widely shared through social networking, including a blog and Twitter @geneticalliance.

That group reached agreement about five major principles for health reform:

  • Access: Create universal access to optimal care that provides an established benefit to individuals, families, and communities.
  • Economics: Realign financial incentives to center on the health of people.
  • Delivery Systems: Coordinate delivery across all spectrums of care.
  • Patient Empowerment:  Create an individual sense of ownership and responsibility for health.
  • Research to Care Continuum:  Link the research and healthcare systems and increase research focus on quality of life and health outcomes.

They see these principles as interconnected:  One bit of our broken health care system can’t be fixed without addressing the intersecting parts as well. “It is imperative that health reform be comprehensive, actionable, and sustainable; it must look at health as a continuum,” says Terry.  Unfortunately, nothing has yet emerged from Congress that looks like it really fits that bill, even the highly heralded, but widely disappointing, Baucus bill.   Still Terry is optimistic.  “Genetic Alliance is still hopeful that Senator Baucus will craft a bill that gets to the root of health reform, and not simply health insurance reform,” she says.

Glazed Looks and Vigorous Nods

During “Genetics Day on the Hill” the Massachusetts group visited our representatives’ offices, gave our opinions to their often surprisingly young legislative staffers, and then dropped off an information packet that offered many more details. We also invited our representatives to “use us as a resource” as they consider future legislation.

It was a lot of walking, getting lost, getting found, and a little bit of really good ice cream that a member of our group led us to in the basement of one of the Congressional office buildings.  Most of all, it was eye-opening.

One of the most important things I learned from this experience was the power individual stories have for politicians. Terry had repeatedly emphasized the importance of these, and she knew what she was talking about.  Legislators are hungry for true stories about problems their constituents face. When you give their staffers such stories, they usually pay attention and nod vigorously.  Massachusetts is one of the few states that has tried to reform the health care system, and so I talked about my experiences as a taxpayer dealing with that.  It seemed especially pertinent since the Obama administration appears to be copying the Massachusetts plan.

It’s tempting to resort to logical arguments in these brisk sit down sessions, but the staffers have probably listened to and dissected every well worn political argument you can think of, particularly if its about health care reform.  Rehashing well-trodden ground drew glazed looks or polite smiles for them.

They seemed much more interested when I talked about the challenges I face as a Massachusetts resident: We are all obliged to buy health insurance that is some of the most expensive in the country because health care costs have kept rising even after the “reforms” were enacted here.

So, if you decide to do your own lobbying, get your story down first. We’re all voters, after all, and each of our stories has power. That’s why “Joe the plumber” almost became a defining moment of the 2008 election.

If you’re really passionate about health care reform, like most of us who attended “Genetics Day on the Hill,” it’s exhilarating to talk to someone who actually might do something about it.  One family brought their child, a pretty young girl with a rare genetic disease who was obviously facing serious health challenges.  Her parents wheeled her in a stroller through the halls of Congress. At the end of the day, their group reported that they were enthusiastically welcomed.  Those are doors that are now opened, however much, to further discussion.

After a rousing speech on health care reform by Congressman Patrick Kennedy (D-RI), we left clutching the business cards we’d collected during the day with our notes, preparing to follow up with our new contacts on Capitol Hill.

Everyone has a stake in how health care reform turns out, and so everyone really should try to understand the arguments and the proposed bills as well as we can. The Alliance does a great job of explaining what they think are the pivot points. Could you explain your position that well? GroupPhoto

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