Yes, it might appear I have gone dark or rogue since my last blog post on Rare Disease Day back in February. Well, that’s only because there’s not nearly enough time in the day to do everything we need to do, is there? So here we have a roundup of activities that have happened and/or been in the planning stages over the last several months:


“The Charles August Long Undiagnosed Diseases Act of 2011”

Back in February 2010, Heather Long was a guest blogger on the MarbleRoad blog site. She talked about what it was like to sit and watch her son’s life be taken from him, and her, by a disease which had no name – he was never diagnosed. She shared with us:

For three years I sought in vain to find someone who could tell me what was wrong with him. Over and over again, I was told, “We can’t tell you what this is, but we can tell you what it isn’t.” All the tests we had run did nothing to further our investigation, but only planted us right back at square one every time. Even more distressing was the fact that each of Cal’s specialists cited statistics as to how many children they had seen within their respective practices that they could actually render a diagnosis for. Cal’s neuromuscular specialist told me that he could only diagnose 40 to 60 percent of the children he saw. The genetic counselor also told me that they were only able to diagnose 50 percent of the children they saw, the other half severely affected by some unknown disease like Cal.

Well, Heather’s fight to get an undiagnosed disease registry up and running is not over. On July 27, 2011 Congressman John Carter will introduce “The Charles August Long Undiagnosed Diseases Act of 2011”. Also on that day, at 10:00 am there will be a press conference hosted by Congressman John Carter and Congressman David Dreier regarding the introduction of this legislation. Heather helped draft this legislation, which creates an “Undiagnosed Disease Registry” to be run by the NIH, and will also participate in the press conference.

The CAL Registry will be accessed by medical providers and allows them to input symptoms, treatments, etc. (while abiding by all privacy and HIPAA laws). From this information, providers can search for other patients that have similar symptoms/signs (and the subsequent treatment, etc.) and initiate/sustain CALlaborative efforts with those physicians handling the similar cases in order to help diagnose and treat undiagnosed diseases and improve the outcomes of their patients. Further, since The CAL Registry will be open to all medical providers as well as government/federal agencies (such as the VA). The CALregistry will also be able to help the VA in diagnosing and treating the men and women in our military who are suffering from undiagnosed diseases associated with their service (i.e. agent orange exposure). Carter’s office has secured two endorsements; one from the Military Officers Association of America (“MOAA”) and one from AMVETS (American Veterans). Moreover, Dennis J. Kuchinich a democrat from Ohio’s 10th District has agreed to be one of the original co-sponsors.

If this legislation is passed, $5,000,000 will be appropriated in FY2012 and the registry will be operational by September 30, 2013.

You may also want to check out “In Need of Diagnosis” – INOD advocates for changes in the medical system that will increase the accuracy and timeliness of diagnosis. It is a resource center for people who suffer with illnesses that elude diagnosis. There’s also a petition on to declare March 5 World Undiagnosed Day.


As of June 20, the National Association of Community Health Centers (NACHC) began a campaign to protect much needed resources for millions of uninsured and underinsured families around the country. After NACHC staff met with top government officials from the White House, Department of Health and Human Services, and Congressional Leadership of both parties, they reported out that they had heard a clear and consistent message: that the current discussions/negotiations related to the FY2012 and future Budgets, coupled with public demands for significant Deficit Reduction, will have a dramatic impact on many domestic programs.

The risks involved:

  • Even if the Budget Deal that negotiators are currently discussing achieves spending reductions at the lower end of the $1-4 trillion range over the next ten year and it results in further cuts to the CHC program’s Base Appropriation anywhere near the $600 million that was cut in FY2011— it would eliminate ALL Federal funding for the Health Centers program within 3 years.
  • Worse still, even if Medicaid is NOT Block-granted or capped, most experts believe that some reductions in spending will be required. States are already clamoring for greater flexibility through Waivers and some are calling for ending the current Health Center Prospective Payment System (PPS). Such actions would result in a reduction of CHC Medicaid payments by AT LEAST 50%.

As a result, on June 30, over 12,000 health center advocates called the White House and made more than 30,000 calls to Congress.

Nevertheless, the budget cutting debate has not been resolved and both Medicaid and Health Center funding remain at risk.


The Walking Gallery

On June 7, 2011 I was a “walker” in Regina Holliday‘s Walking Gallery of health care stories and advocacy at Kaiser Permanente’s new Center for Total Health. Read the story behind my jacket and see photos of it here. Here is a micro doc that Eidolon Films put together:

We have been filming Regina since she lost her beloved husband Fred to kidney cancer in 2009. Since then, she has been using her paintbrushes to advocate for better access, more transparency and safety in our health care system. Her art advocacy first began with a rice paper mural placed at 4 in the morning on the wall of a DC deli. Next was a gas station, where over months of tireless work she painted a massive mural titled 73 Cents. She’s painted canvases in plain air and even the backs of business jackets worn by activists. It’s this last surface that has inspired her latest project: The Walking Gallery. That’s right, a gallery of moving art! Best of all, it can go wherever the wearer goes. You know how much we love art that says something. Well, Regina’s art sings it aloud, shouts it from the rooftops, and stops you in your tracks. She reminds us that our work as artists can indeed make a difference and so it’s been our absolute pleasure to share her story.

The Flammable Heart Exhibition

August 7-13, 2011 will be National Health Center Week. To celebrate the great work that health centers are doing all over the country, and to raise money to support MarbleRoad’s mission to offer support services and financial assistance for patients with complex illness, I will be curating The Flammable Heart Exhibition in New York City.

For the exhibition, participating artists and/or their work have each been inspired by a health care experience. Some of the artists in the exhibition include those who work at health related non-profits such as the DC Primary Care Association and the National Kidney Foundation; others have been influenced by organ donation or life-altering accidents; while others focus on themes of love, pain, emotion and the human experience.

A portion of the proceeds will benefit Lutheran Family Health Centers in Brooklyn, NY.

Happy 4th of July America!