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| National HIV/HCV Coinfection Coalition
April 4th through April 8th - New York City and Washington, DC |
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April 4, 2005 - Brooklyn, NY
Congressman Edolphus "Ed" Towns (NY-10)
David Katz - District Legislative Director
Karen Erica Johnson - Chief of Staff in NY office
Towns' and Congressman Owen's districts they have more cases of Hepatitis C (reported) than anywhere in New York City. A recent study conducted by interns at Towns' office suggested that HCV was among the top 8 causes of death in adults for his district. Because of the scale of the problem among his constituents he sponsored the mono-infection, surveillance and reporting bill introduced last year in the Senate and the House.
Sherrod Brown's ranking status in the Subcommittee on Health (Energy and Commerce) means that Congressman Towns will defer to him first, before reaching out the Republicans writing the bill (Pitts and Bono). However Towns has a good working relationship with the Republicans in the House and on the committee, so if Brown will allow it - Towns could be very effective. It will take the Congressman a few weeks to learn the politics of this reauthorization period.
David and Karen agree that it would be useful to meet with Pallone and Brown's office and to express Towns' interest in this issue. It was suggested that we visit Brenda Pillar in Ed Towns' DC office.
(Unfortunately due to scheduling, it was impossible to meet with her while we were in DC - Michaela will follow up).
April 5, 2005
11am
Congressman Frank Pallone (NJ)
Kathy Kulkarni - Legislative Aid
The schedule for the bill in the House is still under discussion. They plan to address Ryan White after reauthorization of the NIH bills. That could mean that there wouldn't be a bill from the House until late summer or even early September. Several AIDS groups have already contacted/met with Kulkarni with their statements or 'asks' regarding reauthorization, and everyone agrees on 'no flat funding' and ADAP increases. Disagreements stem primarily from where the money will come from (one of the other titles etc). Since Pitts is tied into the Republican stronghold, Kathy will contact Brenda Pillar and confirm that Pallone is interested in supporting this issue. When we are ready "to reach out across the aisle" to Pitts and Bono, we should let Kulkarni know.
There is the possibility that the bill will leave subcommittee and go to full committee immediately because Deal (chair of the subcommittee) has very little experience on health care issues. We need to make sure that our language is under discussion during the WRITING phase NOT during the MARKUP phase. The House subcommittee would like to have a clean markup.
1pm
Federal AIDS Policy Partners (FAPP)
Subcommittee on Ryan White Reauthorization
HCV/HIV Coinfection Presentations: Tracy Swan, Daniel Raymond, Beri Hull and Jules Levin
For those interested, the presentations made by Tracy, Daniel, Beri and Jules are available in their entirety at the link below.
http://www.nastad.org/HCAP05APR2005.asp
Only a few questions were asked during the presentation, but one was asked in a myriad of ways through the afternoon. How do you reconcile advocating for more money for HCV in the CARE Act when everyone agrees there isn't enough money in the act as is?
April 6, 2005
9:30am
HIV Medical Association: Christine Lubinski and Andrea Weddle
American Academy of HIV Medicine: Greg L. Smiley
Christine wants to know which barriers we've run into as we try to get HCV coinfection included in the bill. She sites HIVMA's stance that if someone is coinfected with HCV, this infection then becomes a primary healthcare concern. Christine reviews the steering committee document with RW language and makes suggestions: 1) the readability of the document for people not working on the hill. It is important to put together a statement that speaks more generally about the stance of the National Coalition, support of ADAP increases, funding for the CARE Act in general and areas where we are in agreement with other AIDS groups with national membership bases; 2) we should review page four of the document as it suggests that at 10% limitation be placed on education, treatment and care; 3) Integrate HCV into the definition of severe need i.e.) severe need indicators.
Christine and Greg agree, that HCV coinfection services could be included as 'authorized services' under titles I and II, and integrated into titles III and IV.
HIVMA and AAHIVM support this integration of HCV coinfection into the CARE Act and we can site them as supporters of our language when visiting the hill. This is a victory for the Coalition.
11am
Congressman Sherrod Brown (D-OH)
John Sawyer - Legislative Assistant
Sawyer is not familiar with HCV coinfection issues. Jules told him about his personal experience with diagnosis and treatment. Sawyer thinks the AETC is the most logical place to influence the HCV knowledge base of the social workers, case managers and patients, and was pleased to hear that HIVMA and AAHIVM were on board with our ask.
Waxman may lead on reauthorization, although not still the ranking member in health - because of his experience on the issue. Congressman Brown, will be active the discussion. If Ed Towns is championing the co-infection bill, it may be in our interest to find another congressperson to champion this issue - it may become confusing to the committee if it is perceived he is asking for money (from two sources) for the same issue. Get as many large groups (HIV) as possible to support the inclusion of the language, then take this back to Waxman and see what his interest level is. It is crucial to have Waxman on board. Also we should make an appointment with John Ford, from Dingle's office.
Sawyer impressed upon us that "budget issues are a product of this administration...this legislative body. Just because they are 'pursuing a flat funding policy' doesn't mean that you have to go with that." Maintain that there must be more money for the RW CARE Act to be effective.
12pm
Congressman Joe Barton (R-TX)
Aarti Shah - Personal Aid
Barton is the full committee chair for the House Committee on Energy and Commerce.
Aarti doesn't know very much about reauthorization or HIV issues on the hill. She asks that we contact Sheryl Jaeger - as she has been designated responsible for working on the council with Pitts and Bono. Barton will probably defer to the subcommittee; it is too early to know whether Barton will ask the subcommittee for a clean will without changes.
The schedule at present is NIH reauthorization, stem cell vote in the committee and then Ryan White reauthorization.
2pm
Marty McGeein - DHHS
The president's goals regarding Ryan White reauthorization are:
1) increased accountability to the government for each grantee regarding where/how the money they receive is spent
Most likely the White House and Congress will write the bill together. Why aren't we going the CDC with this proposal as the CDC has been give nearly $1 billion to address education and training issues (in their Viral Hepatitis Program?).
Robert Cordero mentioned the intersection of the language with CAEAR Coalition: namely in the change of the severity of need indicators to include HCV coinfection and the need for AETC education on HCV coinfection.
Marty says that HRSA did a survey of their Title III clinics and several of them were already offering coinfection services at their sites. McGeein asks what the reinfection rate is among substance abusers - there's no long term data to answer this question.
From the DHHS perspective there are three funding streams that can address the issue of coinfection; 1) SAMSHA - mental health, currently has an RFA out regarding Hepatitis C. Contact there is Dr. Beverly Watts-Davis; 2) HRSA - treatment and care; 3) CDC - prevention. HRSA has the largest mandate of all of these agencies. Our language proposal should be taken to each of the agencies above. Ryan White is currently too weighed down, and people continue to try to get the Act to include a wider range of issues. It is important to look at other agencies that could also affect change at a legislative level.
CDC has money in their HIV account as well as in their Viral Hepatitis fund to address coinfection. It is crucial that the people at CDC hear and understand our concerns regarding coinfection. Marty McGeein's personal opinion (not that of DHHS or the White House) is that RW CARE Act will cease to function with more titles and more populations layered onto it.
***Cordero suggests the following after this meeting:
Send thank you to Marty McGeein and follow up with her suggestion of reaching out the CDC and SAMSHA. CC: Chris Bates and Carol Thompson on all correspondence between M.M. and the Coalition.
When we propose this language or idea to CDC and SAMSHA we need a different approach. Both these agencies have more discretionary spending as the CARE Act is only for emergency spending. In the case of the CDC or SAMSHA we could ask for an earmark and an idea for a specific project.
4pm
Congressman Joe Pitts (R-PA)
Julie Hershey Carr - Senior Legislative Advisor
Pitts will probably work with Bono on this, although we should also speak with Sheryl Jaeger. This is the first time Hershey Carr will be working on this issue and health care issues are new to Pitts. They will defer to Jaeger, but will coordinate their writing of the bill with the committee and Bono's office.
April 7, 2005
9am
Senator Jack Reed (D-RI)
Elizabeth Winkleman, JD, PhD - Legislative Fellow
Elizabeth has a background in psychology and so has a more medical interest in HIV/AIDS policy. She is aware of the need for prevalence and surveillance in relation to HCV. Winkelman agrees with the Coalition on all points: she attended the briefing in the Senate and is aware of Rhode Island HCV models led by Dr. Anne de Groot and Dr. Lynn Taylor. Rhode Island is a progressive environment, and it may not be important (as suggested by Jules) to organize a meeting with the home office of Senator Reed in Rhode Island with the individuals aforementioned.
10:30am
Senator John Ensign (R-NV)
Michelle Spence - Legislative Assistant
Jeremy Hancock - Legislative Aid
The H.E.L.P. committee is already holding regular meetings on RW reauthorization. The staff steering committee is only beginning to talk through ideas on the bill and reform initiatives offered by various organizations and Senate offices. Ensign is particularly interested in formula changes for Nevada and how such a change could affect their state and congressional districts.
Jeremy would like more information about the statistics of HCV in the HIV population. Is there Las Vegas prevalence data or studies that would suggest the rate of coinfection among Ensign Constituents? Coalition member, Bob Barone may be able to shed more light on this issue by talking about his work at the Community Counseling Center developing support groups for coinfected persons. Michaela will ask Bob Barone to contact Michelle Spence via email about his program. Ensign would like to see examples of viable programs that have successfully incorporated HCV into an existing Ryan White or SAMSHA funded clinic.
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