Showing posts with label Politics. Show all posts
Showing posts with label Politics. Show all posts

Monday, July 23, 2012

U.S. House Lyme Hearing Great Success

Here's a good summation of the House of Representatives Lyme disease hearing on July 17, 2012.


July 22, 2012                                          
LDA Logo
Lyme Disease Association, Inc. 

In This Issue
Hearing Significance
Summary of Oral Testimonies
Congressional Attendees
Actions You Can Take


HEARING SIGNIFICANCE 


The 2 hour July 17, 2012 hearing, Global Challenges in Diagnosing and Managing Lyme Disease - Closing Knowledge Gaps, was held on July 17, 2012 in Washington, DC. The significance of the hearing is that it is the first time Congress has looked at the global implications of Lyme disease and chronic Lyme disease, and focused on the science and putting patients first. Witnesses gave testimony about how policies and actions by government agencies such as CDC and NIH and of the Infectious Diseases Society of America (IDSA) have prevented research on chronic Lyme disease from moving forward and have hindered patient diagnosis and treatment. Solid science was presented for the record showing persistence in animal studies and cutting edge testing for Lyme was examined.

  

July 17, 2012 Office of Congressman Christopher Smith after the hearing
Ray Stricker, MD, Vice President, International Lyme & Associated Diseases Society;
Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org
Jeannine Phillips, Moderator, LymeQuestNJ
Congressman Christopher H. Smith (NJ-4) Africa, Global Health & Human Rights Subcommittee
Patricia V. Smith (Pat),President, national non-profit Lyme Disease Association, Inc.(LDA)
Tim Lynagh, Legislative Director for Christopher Smith


Brief Summary of Oral Testimonies 

Congressman Christopher Smith opened the hearing with a lengthy statement about the problems he has heard about from Lyme patients about the inability to be diagnosed and treated and the role of federal agencies and also of the Infectious Diseases Society (IDSA) in the controversy surrounding Lyme. He also mentioned that Lyme Disease Association President Pat Smith alerted him to the problem about 20 years ago and he went through the history of federal efforts he has mounted to obtain monies and research and an advisory committee, the latter effort he likened to his success in autism which he was able to have passed with much less difficulty that Lyme. He introduced:

Stephen Barthold, PhD, Distinguished Professor, School of Veterinary Medicine, University of California, Davis who spoke about his long career in Lyme research, in particular, his animal studies. He spoke about the contentious nature of the Lyme field and the persistence of Borrelia burgderferi, the organism that causes Lyme.

Raphael Stricker, M.D., Vice President, International Lyme and Associated Diseases Society (ILADS) who is a clinician with 2,000 Lyme patients from all over the world. He discussed the lack of knowledge of some doctors as an impediment to diagnosis and treatment and the need for national protection for Lyme treating physicians.

Mark Eshoo, Ph.D., Director, New Technology Development, Abbott who spoke about studies in mice and survival of the spirochete and how existing tests are only antibody response tests and are not really sensitive so many cases are not diagnosed. He talked about his new research using cutting edge technology to directly detect the Lyme bacteria and strain variations as a possible solution to end this controversy.

Patricia Smith, President, Lyme Disease Association, who testified about the problems of patients getting diagnosed and treated and treating physicians being allowed to practice clinical judgment in the treatment of Lyme patients. The problems relate to the two standards of care for Lyme (ILADS & IDSA). She explained how patients and advocates are being unfairly attacked in peer review by some of the same researchers whom the NIH funds and spoke about the broad brushed conclusions of the NIH treatment studies which have incorrectly concluded that no long term treatment helps any Lyme patients. A breakdown in the CDC Lyme surveillance system has led to inconsistent inaccurate counting of Lyme cases nationwide, and a "policy" of NO Lyme in the South and Midwest has contributed to little diagnosis and treatment in that region. She presented the problems of children with Lyme being unfairly characterized as faking illness despite studies showing IQ drop, and that some have committed suicide. Mothers have been charged with Munchausen's and had children removed from the home for getting them treated by licensed physicians. She noted the absence of key Lyme players CDC, NIH, IDSA who now remain part of the problem and need to be brought to the table.

Evan White, who narrated his journey from preteen Lyme patient who got sicker from short-term treatment to one who through years of careful long-term treatment was able to become a lawyer, husband and father. At age 13, he described himself as a "vegetable." He was deteriorated and transformed, weighing 60 pounds. He now described himself as fully recovered and a Lyme advocate. He noted that he testified before the 1993 Senate Hearing on Lyme disease.

Ms. Stella Huyshe-Shires Chair Lyme Disease Action discussed the problem of Lyme in the UK and across Europe, indicating that the actual incidence is probably so much higher in the UK than reported due to so few physicians recognizing the disease. She said there is much polarization in Europe and everyone needs to stop beating the drum and move forward. She mentioned the influence of IDSA guidelines in Europe and how patients have difficulty getting diagnosed and treated there.

During Q & A, many specific comments were elicited on issues such as biofilms, cell wall deficient forms, school issues, calling for more research, possible use of the new testing methods commercially, how can legislators ensure monies go to research and many other issues.


Congressional Attendees

Congressman Christopher Smith (NJ) and Congresswoman Bass (CA) and various Congressional Staff were in attendance for the Committee.   Both Congressman Frank Wolf (VA) and Congressman Chris Gibson (NY), who are not Committee members, attended and made statements about the amount of Lyme disease they see in their districts and Congressman Gibson mentioned Lyme being a constituent driven issue (he hosted a forum in NY where Pat Smith was a panel member). Congressman Gibson also asked questions to the panel. Both legislators thanked Congressman Smith for his leadership in the House on this issue. Congressman Smith acknowledged the role of Senator Blumenthal when he was CT Attorney General in investigating the IDSA and suppression of data, and his role as Senate Lyme bill (S-1381) sponsor. He discussed his own bill in the House (HR-2557).  It is not uncommon for only a few members to be present at the hearing. All members receive both written and oral testimonies.


ACTIONS YOU CAN TAKE

1) Watch the hearing & read the written testimonies (click here).

2) At this time, the LDA suggests that you send a BRIEF only one page fax to the following US House Representatives thanking them for their role (listed after their name in parenthesis) in this hearing:

Congressman Christopher H. Smith (NJ), (Subcommittee Chairman) 202 225 7768 (fax)
Congresswoman Karen Bass (CA), (Subcommittee Member who attended) 202 225 2422 (fax)
Congressman Frank Wolf (VA) (attendee) 202 225 0437 (fax)
Congressman Chris Gibson (NY) (attendee) 202 225 1168 (fax)

If any of these people are your US Representative, you can send an email through their email on their website. Those emails are usually limited to constituents.

3) Urge your 1 US House Representatives and your 2 US Senators to Co-Sponsor the Lyme bills today!  Click here for contact information and sample phone blurbs / letters.

4) Please forward this to others connected to Lyme and encourage them to sign up for the LDA newsletter by clicking on link below.
The  LDA is an all-volunteer national nonprofit, 501 (c) (3), (has never had employees), dedicated to Lyme disease education, prevention, raising monies for research, and patient support. It has been accepted into the 2012 Combined Federal Campaign (CFC) which recognizes it as an approved charity for federal workplace giving. It is also a Guidestar.org exchange member, recognized for its transparency in operations. LDA is an Environmental Protection Agency PESP Partner and offers LymeAid 4 Kids program for children without insurance coverage.

LDA-funded research has been acknowledged in 25 peer review journals to date, and LDA is presenting its 13th Lyme &Tick-Borne Diseases scientific conference jointly sponsored by Columbia University in Philadelphia in 2012. The faculty are comprised of national and international researchers in the field of tick-borne diseases and attendees can receive Continued Medical Education (CME) credits. LDA is associated with 45 Lyme organizations nationwide a loose network called LDAnet, with LDA as the umbrella organization. They are working together to make a difference for Lyme patients. In 2009, LDA developed an electronic billboard ad featured in Times Square, promoting the spread of chronic Lyme disease throughout the world.

For information on Lyme disease  www.LymeDiseaseAssociation.org  
PO Box 1438
Jackson, NJ 08527
888-366-6611  
   



Thursday, April 22, 2010

Political Fundraising -- AAArg!

Just got an email from Brad Woodhouse of the Dem party, asking for $ to oppose the Republicans who are opposing banking reform. What irony. Here's a long letter I wrote in reply:
Dear Brad,
I keep being contacted by the DSCC and members of Congress for more and more contributions. This is ironic considering the state of the economy, and my health care situation, which is that I have paid $70,000 out of pocket for my health care, which is breaking the bank. Not to mention the state of the banks themselves. It must be clear to everyone in Congress by now that until we have real campaign-finance reform that our country will be hemorrhaging financially even more than already necessary. The DCCC e-mail i got this morning says that the Republicans spent $86 million fighting healthcare reform, and the Democratic Party probably tried to pass the bill by spending equal amounts. So let's figure at least $200 million was spent just campaigning for this new health care bill. If we include special interests, it's probably a billion. Talk about irony. What could we have done with $200 million? Save lots of schools? Provide healthcare for thousands and thousands of people? Feed the hungry? Instead it goes to lobbying and media ads.

To quote The News Hour interview with DAVE LEVINTHAL, Center for Responsive Politics (Dec 22, 2009):

"But what the founding fathers probably didn't anticipate when they were writing the Constitution is $3.3 billion spent on lobbying, as was the case in 2008. So, you have a situation where a lot of people feel like lobbyists and the people who hire lobbyists have really have taken over the process."

During the primaries for the last presidential election cycle, Joe Biden put it best. During a primary debate, he was the only candidate with the nerve to say that until campaign finance reform occurs and corporate money is taken out of financing campaigns we would not see any real change in Washington. So, as one of your constituents who has paid dearly to help elect Barack Obama, and often contributed to MoveOn.org and to the Democratic party, I just want to say that I am done with making financial contributions to political campaigns and causes.  Our nation's political campaigns should be financed publicly to level the playing field for all candidates. And this new policy of allowing corporations equal rights in campaign contributions is ridiculous. Although the Supreme Court argues that it is a constitutional right since corporations enjoy the same benefits as do individuals in this country, it is clearly insane that a corporation should have the right to contribute to political campaigns. The next thing you know, Congress will have human representatives of corporations filling seats.

Two or three states in our Union have adopted a public financing model for state politicians. I have interviewed one from the state of Arizona, Marc Spitzer, who said his entire strategy of work changed when he finally was converted from the old favor-payback system to public financing. Here is a quote from Spitzer from an interview with Bill Moyers on his program NOW:

MARC SPITZER: I'm running for an office that is very powerful in the state, that regulates the utilities. Does it make sense for me to go hat in hand to those utility companies to ask for campaign contributions and then if I win the election turn around and--and vote on their rate cases. Most people thought that would--that didn't make sense.

MOYERS: Spitzer had served four terms in the state Senate. And learned what it takes to raise money from special interests.

MARC SPITZER: Typical campaigns you spend an awful lot of time dialing for dollars. You're on the phone, you're calling people and you're asking for money.

MOYERS: Public funding changes all that.

MARC SPITZER Under Clean Elections once you raise the requisite number of five-dollar contributions, the fundraising is over. And you can spend all your time communicating with the people."

http://www.pbs.org/now/transcript/transcript_cleanelections.html

So, Brad, I'm going on record as choosing to no longer make contributions to political campaigns or efforts. I would like to encourage you to support any bills about public financing and campaign finance reform that come across your desk. I already pay enough taxes, and would be willing to pay a little bit more knowing that there was an equal playing field for all for all political candidates and causes.

Only a few weeks ago, many Americans thought the possibility of real health care reform was impossible in this country, due to the influence of special interests. Now this has been shown to be untrue. This Congress can do amazing things, like flying in the face of corporate influence. Now it is time for real campaign finance reform while we have momentum. Let's get the big money out of politics and free up our politicians to do the work that we have elected them to do, without the obligations they feel to those who paid for their campaigns -- the big businesses and deep pockets they owe favors. Let's see if we can actually  set an example for the world of what real democracy is, not what the military-industrial complex, or big corporations, or special-interest groups would like America to be. Think of all the good we could do with the money that is wasted on lobbying and on political campaigns. And think of all the work you and Congress could get done for us, your employers, if you all didn't have to constantly worry about financing your next campaign cycles.

By the way, asking folks to give politicians their hard-earned cash every day to support their causes, when the banks have already pilfered our savings as a result of poor Congressional versight and SEC ineptitude is an insult to our intelligence. As Einstein said, you can't solve a problem on the level of the problem. Throwing good money after bad is false economy. Get to work  introducing bills and changing policy, not championing partisan causes by filling your advertising war chests with donations from us, your tax-paying employers. We already pay you a salary. Funding a charity is one thing. I can get behind that, because they have no other sources of incme. However, funding causes brought by politicians is a very weird and undemocratic way to conduct governance in a country supposedly dedicated to the Rule of Law and the superiority of democractic principles. Does it really boil down to who ever collects the most advertising money wins the political initiative du jour? What kind of democracy is that? One where a dollar is mightier than a vote? And we wonder why voter turnout is so low. 


Sincerely,
Bob Cowart

Bob Cowart
Author of 47 books about computing
Bob@cowart.com
510-540-6667
www.cowart.com