Wednesday, April 29, 2009

Who will Represent America’s Poor as We Move Toward Health Reform?

Both the Administration and the Congress have been gearing up for health reform for many months. There are some good signs that both branches of government are taking health reform seriously. The President has spoken out on many occasions on the need for health care reform which includes a transition toward electronic health records on an accelerated timeline. Congressional committees have held a number of hearings and discussions. But the voices of our most underserved populations and those who serve them directly have largely been absent. This must change because poor people in our country, the uninsured, and people of color are sicker and die disproportionately because of lack of access to care and differences in the quality of care when it is given. Many in our most vulnerable communities use the emergency room as their only source of primary care because they have no health insurance, speak languages other than English or lack access to adequate preventive and primary care services.

As a result, those most at risk experience poorer health outcomes for almost every chronic condition studied and for most surgical procedures. This is the definition of health disparities and why our nation experiences the high cost of treating them. As our nation becomes even more of an ethnic melting pot, these disparities will only get worse if we don’t get health reform right this time around. By 2050 nearly one in two Americans will be persons of color – folks who experience higher levels of chronic disease, shorter life spans, less health insurance and generally poorer health due to lower participation in health insurance plans and less access to care.

But where are these voices in the current health care debate? Both the Administration and the Congress hear regularly from a chorus of organized representatives from the health care industry as they should. But the voices of those most affected by health disparities and the voices of those providers, hospitals and insurers who are most knowledgeable and most involved in their care are largely missing from the current national debate. A recent Senate panel on health care reform included some of the most distinguished names in the health care community. Unfortunately these panels did not include a single representative from underserved communities or those who serve them. If we are to truly reform health care in this nation, this must change.

This Administration and our Congress must enact measures that implement coverage and access for those who cannot now afford health coverage while paying attention to the worsening shortage of primary care providers in our nation’s poorest urban and rural communities. The use of electronic health records and health information technology must also focus on the maximizing the affects of these changes in underserved communities.

As the Administration and the Congress move toward health reform, they must widen the net of the communities and their representatives to whom they are talking. In the establishment of the Health Information Technology Committee of the Department of Health and Human Services, a designated seat was established for "An expert in the health of vulnerable populations". I am pleased to have been appointed by the Administration to that position and look forward to input from my colleagues from a broad spectrum of safety net provider organizations and from community and faith-based organizations to help bring the voice of America's most medically underserved folks into the critical discussions concerning the widespread deployment of HIT. What an exciting time this is and what a great responsibility we have to get it right!

3 comments:

Joshua Seidman said...

Neil, you're absolutely right. And your comments on this subject that the "Health 2.0 Meets Information Therapy" Conference last week made a lot of people think. I mentioned this in conference reflections at http://ixcenterblog.org/archives/691.

Thanks for keeping us all focused on these critical issues.

Josh Seidman
President, Center for Information Therapy

Susannah Fox said...

I'll chime in with Josh to say that your keynote/interview with Susan Dentzer was a highlight of the "Health 2.0 Meets Information Therapy" conference. As I wrote on e-patients.net I would read the transcript or watch the video of your remarks again any day of the week.

For example, I was interested to hear that both your inner-city and rural practice has been paperless since 2002 and 80% of patients in your Bronx clinic are connected, either via mobile devices or computers. The Pew Internet Project has data to share on that score, but I like hearing "on the ground" observations, too.

Laurie Wiegler said...

Dr. Calman, I have a unique window into the suffering of the poor and the type of treatment afforded them - not in all cases, but in many instances in the United States. Because of a protracted job search in my field of journalism, one that has included interviews with top companies in Manhattan, my health has suffered. After Dr. T died I lost my insurance. When I reinstated it, they put a 1-yr rider on my spine and neck, the very body parts that needed care (I fell down a flight of stairs 3 days before Dr. Tamarin passed.) I then found I was eligible for state-sponsored insurance called SAGA here in CT. I am happy for that. What I am unhappy with is the stigma that some (not all) people toss my way, the fact that I am limited to who I can see and can't see. Meanwhile, my expensive health insurance policy is running my poor father $450/month. It's a policy that will not even cover my aching back until January.

I would be happy to write more letters on behalf of the indigent and even the middle-class strugglers like myself, those lost in the mix of a twisted, selfish healthcare system that I for one refuse to be part of for more than another year or so. I refuse to grow old in this country as it stands today.

Life is so much more liveable in places like France, where doctors come to your home and where people aren't choosing between doctor's visits and groceries.

Write me, Dr. Calman, if you can use my communication skills in any way.

I miss Dr Tamarin every day. I sometimes breathe deeply when I am afraid, when I feel I haven't found the right doctor and am alone.

Best,

Laurie Wiegler
lauriewiegler@gmail.com