“Show me the way”

Monday, June 22 2009

Kairol and I exchanged comments in my post about health care legislation, wherein she expressed some frustration about the lack of organization and unity among patients. These bills have tremendous potential to transform the circumstances of illness and disability in this country, so we need to be involved. In theory, our involvement should be through patient advocacy organizations – but they’ve mostly dropped the ball. (But, hey – they’re still really busy looking for “the cure”.)

I agree with Kairol that, ideally, whatever happens “needs to be an organized effort so we have 1.5 million doing this” – but even a much smaller number of vocal patients could make a difference. What we lack in numbers, we make up in moral authority; health care is for us, and health care reform is ultimately about us. We ought not to be shy in reminding people of that, nor of making clear the extent to which our suffering is the root of the debate. In anything we do, we should be clear who we are: sick people who need health care. We are patients, and that alone is powerful.

So what can patients do? Here’s a few ideas:

First, some good news; after I wrote the post about the Senate’s bill, I learned of the Tri-Committee bill in the House of Representatives. “Tri-Committee” refers to the three committees that have responsibility for health care in the House, and their leaders put together an excellent reform package. As currently written, this bill will guarantee you can get health insurance – even with a pre-existing condition – and offers fairly generous help if you can’t afford that insurance.

(1) So the first thing we can do right away is tell Congress we like this bill. I’ve posted the list of members of the three committees beneath the jump; if your Representative is on the list, call (202)224-3121. Ask for your Representative – include the state – and tell whoever answers that you support the Tri-Committee bill. It’ll take about two minutes, tops – but you can also visit your Congressperson’s web site to find an email address, if that’s more convenient.

Meanwhile, you have probably seen a lot of newspaper articles that tell the sad, sad story of someone suffering from an illness, which their health insurance won’t cover; inevitable, the article tells this sad story and then turns to left-wing wonk and then right-wing wonk for competing explanations as to what this person should get from reform. They never ask, “what does this person want from reform.” We need to be more assertive – both in owning and telling our stories, but also in making clear what we want from reform.

(2) So another thing you can do is tell your story. We have compelling stories: people want to read them, and journalists want to print them. The most obvious way to tell your story is in a letter to the editor of your local newspaper; explain your situation, your difficulties with health care, and what changes you would like to see. Do that in 150-200 words, and you have a reasonably good chance of getting published. If you prefer to remain anonymous, you might instead leave comments on any of the popular wonk blogs (e.g. The Treatment) explaining your situation and views; it’s not ideal, but it is another way to get heard.

Finally, we do need to get organized. But I don’t think we need a new organization; anyway, it’s too late in the process to get new group rolling. But there are organizations that we can plug into, that will help us get active. Recently, I started volunteering with Health Care For American Now – an umbrella group that includes a few patient organizations. I plan to attend their rally in DC this Thursday – the 25th – and then lobby my elected officials for reform (I’ll post about that later this week). I know most people won’t be able to make the trip, but HCAN has lots of local efforts across the country – and probably something in your neighborhood. Still, I don’t want this to be interpreted as an ad for HCAN; I think they’re doing good work, and I want to be part of that work, but I recognize that some people will disagree with their goals and methods. The point is not that you should join HCAN (though you should, anyway)…

The point is, (3) we should be looking for organizations that we can get involved in as patients. When I joined HCAN, I made sure they knew who I was and why I was there – and they’re helping me tell my story and push for the change I want. Any other reasonably large organization will have the same capacity – it’s simply a matter of finding an organization, getting plugged in, and not being afraid or ashamed of who we are and what we want.

This isn’t – none of this is – a substitute for having our own organization advocating for us. But the organizations we have aren’t doing that. Barring a new organization, the above steps may be the best we can do for now. It may not seem like much, but it is one way to make our voices heard – maybe not the best way, but a good way nonetheless.

Education and Labor

Democrats

George Miller, Chairman (CA-07)
Dale E. Kildee (MI-05)
Donald M. Payne (NJ-10)
Robert E. Andrews (NJ-01)
Robert C. Scott (VA-03)
Lynn C. Woolsey (CA-06)
Rubén Hinojosa (TX-15)
Carolyn McCarthy (NY-04)
John F. Tierney (MA-06)
Dennis J. Kucinich (OH-10)
David Wu (OR-01)
Rush D. Holt (NJ-12)
Susan A. Davis (CA-53)
Raúl M. Grijalva (AZ-07)
Timothy H. Bishop (NY-01)
Joe Sestak (PA-07)
Dave Loebsack (IA-02)
Mazie Hirono (HI-02)
Jason Altmire (PA-04)
Phil Hare (IL-17)
Yvette Clarke (NY-11)
Joe Courtney (CT-02)
Carol Shea-Porter (NH-01)
Marcia Fudge (OH-11)
Jared Polis (CO-2)
Paul Tonko (NY-21)
Pedro Pierluisi (PR)
Gregorio Kilili Camacho Sablan (Northern Mariana Islands)
Dina Titus (NV-3)

Republicans

Howard P. “Buck” McKeon, Ranking Member (CA-25)
Thomas E. Petri (WI-06)
Peter Hoekstra (MI-02)
Michael N. Castle (DE-At Large)
Mark E. Souder (IN-03)
Vernon J. Ehlers (MI-03)
Judy Biggert (IL-13)
Todd Russell Platts (PA-19)
Joe Wilson (SC-02)
John Kline (MN-02)
Cathy McMorris Rodgers (WA-05)
Tom Price (GA-06)
Rob Bishop (UT-01)
Brett Guthrie (KY-2)
Bill Cassidy (LA-6)
Tom McClintock (CA-4)
Duncan D. Hunter (CA-52)
Phil Roe (TN-1)
Glenn ‘GT’ Thompson (PA-05)

Ways and Means

Charles B. Rangel, NY (Chairman)
Fortney Pete Stark, CA
Sander M. Levin, MI
Jim McDermott, WA
John Lewis, GA
Richard E. Neal, MA
John S. Tanner, TN
Xavier Becerra, CA
Lloyd Doggett, TX
Earl Pomeroy, ND
Mike Thompson, CA
John B. Larson, CT
Earl Blumenauer, OR
Ron Kind, WI
Bill Pascrell Jr. , NJ
Shelley Berkley, NV
Joseph Crowley, NY
Chris Van Hollen, MD
Kendrick Meek, FL
Allyson Y. Schwartz, PA
Artur Davis, AL
Danny K. Davis, IL
Bob Etheridge, NC
Linda T. Sanchez, CA
Brian Higgins, NY
John A. Yarmuth, KY

Republicans

Dave Camp, MI
Wally Herger, CA
Sam Johnson, TX
Kevin Brady, TX
Paul Ryan, WI
Eric Cantor, VA
John Linder, GA
Devin Nunes, CA
Pat Tiberi, OH
Ginny Brown-Waite, FL
Geoff Davis, KY
Dave G. Reichert, WA
Charles W. Boustany Jr. , LA
Dean Heller, NV
Peter J. Roskam, IL

Energy and Commerce

Democrats
Henry A. Waxman, CA, Chair
John D. Dingell, MI, Chair Emeritus
Edward J. Markey, MA
Rick Boucher, VA
Frank Pallone, Jr., NJ
Bart Gordon, TN
Bobby L. Rush, IL
Anna G. Eshoo, CA
Bart Stupak, MI
Eliot L. Engel, NY
Gene Green, TX
Diana DeGette, CO
Lois Capps, CA
Mike Doyle, PA
Jane Harman, CA
Jan Schakowsky, IL
Charles A. Gonzalez, TX
Jay Inslee, WA
Tammy Baldwin, WI
Mike Ross, AR
Anthony D. Weiner, NY
Jim Matheson, UT
G.K. Butterfield, NC
Charlie Melancon, LA
John Barrow, GA
Baron P. Hill, IN
Doris O. Matsui, CA
Donna M. Christensen, VI
Kathy Castor, FL
John P. Sarbanes, MD
Christopher S. Murphy, CT
Zachary T. Space, OH
Jerry McNerney, CA
Betty Sutton, OH
Bruce L. Braley, IA
Peter Welch, VT

Republicans

Joe Barton, TX, Ranking Member
Ralph M. Hall, TX
Fred Upton, MI
Cliff Stearns, FL
Nathan Deal, GA
Ed Whitfield, KY
John Shimkus, IL
John B. Shadegg, AZ
Roy Blunt, MO
Steve Buyer, IN
George Radanovich, CA
Joseph R. Pitts, PA
Mary Bono Mack, CA
Greg Walden, OR
Lee Terry, NE
Mike Rogers, MI
Sue Wilkins Myrick, NC
John Sullivan, OK
Tim Murphy, PA
Michael C. Burgess, TX
Marsha Blackburn, TN
Phil Gingrey, GA
Steve Scalise, LA

Tags: care, pols

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