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233616 tn?1312790796

SHOCKED by the Politics

What I've learned recently is that HCV has no virtually no funding state side, no research to speak of, none of the billions that went into AIDS/HIV research. Only 2 states have thrown even a bone towards public education etc. (washington state gave 400k, the most, but nothing in terms of the scope and scale needed.) (especially when you understand even one tiny trial costs 2 mil. minimum)
Why?

a. because there is a stigma attached, earned rightly or wrongly.

b. because states and feds learned their lesson on HIV, start funding and it becomes a quagmire so most states are refusing to pass even basic public health education laws on the subject, much less being willing to offer funds for people to be tested, if they WANT to be, etc.

c. most HCV people are fatiqued and depressed due to the disease, and ergo do not speak out as a group. (instead of thousands willing to tesify before our state legislature, as with AIDS, we could not muster 10 articulate people last session.) (instead of millions of emails to congress, they get "dozens only".)

d. many with HCV are actually themselves fighting all legislation, calling themselves "the innocent victims" and ergo, fighting so hard to be distinguished from those who ever "made a mistake" that they would rather see NO new funds/research/laws to deal with this disease, than to see themselves "grouped" with those who took any risks.
So instead of forward motion, we see half the HCV vocalists fighting against their own treatments and/or cures in an effort to maintain their self-righteousness!  

I'm summarizing here a 2 hour conversation I had today, but wondering if this is news to anyone besides myself and if others would like more info on how we might politically change the climate to facilitate better research and cures? I have some for those who are interested.

MaryB
56 Responses
Avatar universal
Wow! That has not been my experience ast all. In factwe are members of the National Hepatitis C Advocacy Council, a group of 25 non-profits who "speak" with one voice, especially on the Hill. We have a bill with bi-partisan support introduced in both the House and the Senate. It's called the Hepatitis C Epidemic and Prevention Act. It is asking for funds to be used on education and services for hepatitis C patients.

While there is always back-backing and some competition for funding, the hep community has worked fairly hard at working together.

I do agree that much more is needed in the way of funding research for this disease. Part of the reason we do not do as well as HIV is that HCV does not hit children the way HIV did when the disease was first discovered. It also does not kill people quickly as AIDS did in the early years.

Write to your Congress people and ask them to support Senate Bill S 521 and HR bill 1290. You can read the bill in it's entirety at the National Hepatitis C Advocacy Site.(www.hepcnetwork.org).
135456 tn?1301441224
I agree with your comments.  I especially agree with your remark regarding " most are fatigued and depressed due to the disease, and ergo do not speak out as a group".  
Avatar universal
A close friend of mine has testified in front of commissions in both the US Senate and House of Representatives. I helped lobby the state legislature here on behalf of a fireman who contracted HCV on the job but was refused workmen's cop.The law got changed, which didn't help him directly, but it helps all who will follow. And I got the honor of attending the bill signing ceremony in the governor's office. If you live in or near a large town/city there are usually ways to get involved as much as you want to.I've done speaking tours, educational presentations for health workers, colleges, and museums. And they can always use another envelope stuffer. I've done plenty of that.as well.

Its hard to compare AIDS to HCV. HCV poses no urgency for us as a nation.The transmisson vectors it employs aren't considered efficient, and in less than 15 years the vast majority of those who are currently infected will be representing the last of the boomers pushing through the cycle.The infection rate in the late '80's was 300,000 a year, and in the 90's dropped to 40,000 per year. It's at about 30,000 a year with 70% of that IVDU.These numbers have held for several years now.

Mortality from HCV is 1-3%. Since 1981 1.5 million have been diagnosed with HIV/AIDS in the USA. One out of three are dead, or a half-million people. This is why it does not, and will not, receive as much money as HCV.

When AIDS first grabbed attention in this country it was attacking almost exclusively one community-the gay community. Its not a secret that Hollywood has a higher than avg per capita of gays and many are there working in the entertainment industry. .When you have these contacts and can get celebrities to support your cause as well as an enourmous amount of press, celebrity charity events (Live AID, etc) it can heklp to launch a large awareness program.

Who do we have to represent us on the national stage that people know ? Pam Anderson, Naomi Judd, and David Crosby. And none of them are willing to give it enough to be called spokespersons.

Most of the major trials and studies even when administered by drug comanies or teaching hospitals, receive the bulk of their overall funding from the NIH.

These are the realities and politics of the situation according to my analysis.
The only thing (besides NIH funding) that accounts for so many drugs in the pipeline right now is the desire (re:profit drive) of drug companies to have an approved HCV adjunctive med by the expected peak of known infections appx 2016. The race is on not just for our little peak in the US but the worldwide market as well. For this kind of payoff drug co's are more willing to spend more of their own money on research.

reagrds,
Mr Liver
Avatar universal
couple of errors---3rd par. last line should read "This is why it does not, and will not, receive as much money as HIV/AIDS for research funding.".
Mr Liver
148588 tn?1465782409
merryBe
Please hear what Susie has to say on this subject. She' has many years experience on this particular subject and many times many 'two hour conversations'.

Mr Liver
In re drug development and why 2015 is a more significant year than 2016
hepcproject.typepad.com/hep_c_project/2004/06/chirons_hepatit.html
Avatar universal
Evel Keneivel had the opportunity to speak out about HCV (he had a liver transplant from HCV) but refused because he wouldn't get paid for it.
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