Saturday, July 18, 2009

Lisa Goes To Washington

Well, for those who know where I live, this is not such a surprise. In fact, Washington, D.C., is only 7 miles down the road. Yesterday, I traveled down to the National Press Club to attend the "Health Care Reform: Putting Patients First" - a medblogger/politician conference hosted by Dr. Val of Better Health. As has been noted in the blogosphere, there were no patient bloggers on the panels. However, there were a few of us in the audience, including myself, Duncan Cross, and Kerri Morrone Sparling of Six Until Me.

First of all, it was great to meet some of the bloggers I read and admire in person. To have Dr. Wes come up to me enthusiastically afterwards, or even Duncan who came up quietly as soon as the forum officially ended to introduce himself. Very good to see Kim of Emergiblog who I had met in Florida last October when we both spoke about the blogging at the Johnson & Johnson communications convention.

There is still quite a bit of information I'd like to ponder which was presented or discussed during the forum, but here are just a few initial reactions. (Don't fret, I'll post more later.)

The keynote speaker was Congressman Paul Ryan (R-WI), co-author of the "Patients' Choice Act" who is "the Ranking Member of the House Budget Committee, where he works to bring fiscal discipline and accountability to the federal government. He also serves on the House Ways and Means Committee, which has jurisdiction over tax policy, Social Security, health care and trade laws. Paul has focused his recent legislative efforts on addressing our long-term fiscal crisis: the explosion of entitlement spending."

Ryan made it very clear that he is NOT in support of "America's Affordable Health Choices Act" which was introduced in the House on July 14, 2009. He said, "I don't want the government interfering with patients and doctors. I don't want insurance companies interfering also." His speech was very much anti-Obama and anti-democrat there is no denying. "It isn't honest competition when the government is referee and player. [...] We will be on the path to socialized medicine." He urged - "You must act right now [to] defeat this threat!!"

Very disappointing to me was that Congressman Ryan did not stay to listen and interact with the medical professionals and bloggers. This wasn't a true conversation which allowed politicians and doctors/nurses to listen and learn from each other. Disappointing. [Dr. Val has added a transcription of Ryan's address at Better Health.]

Another presenter was Robert Goldberg, Ph.D., Vice President and Director of Programs of Center of Medicine in the Public Interest which is "a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness."

He began his presentation with a video including negative commentary and remarks regarding the health care systems in UK and Canada. Admittedly, this did not help me to keep an open mind to hear what he had to say, but be open I tried to be. When looking back at my notes, I see that I didn't take many other than to check out the website which is presented by CMPI Advance.

I mentioned near the top of this post that there were no patients on either of the panels. However, there was one patient blogger who spoke briefly and that person was ME!! At the very end of the forum, I was able to ask a question of the second panel. But ask a simple question, I did not. Instead I gave background information which led up to my question. The subject of my inquiry focused on the costs of routine care for one patient living with RA and MS.

Of course, there is no easy answer to my dilemma but something encouraging happened after the forum concluded.....several doctors, a couple of nurses, and Robert Goldberg approached me to let me know that they enjoyed and appreciated my question. Too often the patient's voice is not being heard, least of which the voice of a patient dealing with chronic illness not fitting into the top five categories (ie. heart disease, cancer, stroke, COPD, and diabetes).

Goldberg seemed surprised to learn the limitations on the patient assistance program of which I am a participant. He even offered to talk to somebody at TEVA....keep in mind that CMPI does have financial relationships with the pharmaceutical industry. We spoke quite a bit after the forum and Goldberg mentioned an interest in joining forces to write an article. He said, "I am serious." I believe that he plans to formulate his thoughts on the matter and get back to me.

Earlier during the forum, a question came from Nancy Hughes of the National Health Council who has the "Campaign To Put Patients First." In fact I was sitting next to Nancy, and after she asked her question, I leaned over to say that I'd like to talk to her after the program. Unfortunately she had to leave prematurely, but I certainly to plan to contact her as "the mission of the National Health Council is to provide a united voice for people with chronic diseases and disabilities."

Of course, I look above and realize that this short post, to be expanded upon later, has grown rather large. And I haven't even mentioned the doctors and nurses who spoke. There is so much to cover, so I will stop here and simply say that more is coming.

Here is an occasion where I'm very glad that I live within the Washington Beltway and was able to attend an event. Too often I am unaware of events when they occur, but thanks to the blogosphere I didn't miss this one. Yeah!!


  1. Thanks for the interesting report and for representing the patient's POV.

  2. Hmmm, I commented on Facebook. Drat! Yes, thanks for rep. They do NOT want to hear from patients.

  3. Hey Lisa, it was so nice to meet you (finally, right?!). Thanks for being such a strong patient voice in the medical blogosphere, and I'll be interested to know if Robert gets back to you. He seemed to have an interest in your story, and I'm curious to see how he moves forward.

  4. Thanks for sharing this! Our community is fortunate that you were there to represent the patient side, even if your participation was limited. It's unfortunate, but not surprising, that the politicians didn't want to hear the patient side of things and that patients didn't have a more active roll. I look forward to hearing more about what you heard and observed. I hope you are able to participate in something like this again. It's great that you can take advantage of your proximity to D.C. I miss living in the Beltway.