Hi Enavigo,

I recognized your photo in a NVHR photo op. Nice to see patients of all stripes represented at the Summit. I was the older 'white guy' with the unkempt white beard.

Appreciate your comment about the lack of cultural, religious, and geographic diversity in many HCV and harm reduction forums and events. I pretty much ignored the NVHR when Project Inform (San Francisco) housed it. I love San Fran but it is culturally more intergalactic than American. As someone who splits his time between rural New England, Appalachia, and FLA, I've learned that our country is much greater than the sum of its parts - or San Fran.

Sorry we haven't heard from the Hepatitis Education Project (Seattle, not far from San Fran...) which demographically and geographically is not far removed and now houses the NVHR. I trust they will show a greater willingness to place viral hepatitis above HIV/AIDS as a disease priority. If not, then they need to get out of hepatitis advocacy because they aren't doing us any good otherwise.

Best Wishes.

Love22

Hi Kristen,

I didn’t see this message until today, sorry about the delay in responding. Thank you so much for your report, it’s very telling of the attitude still affecting our group. I have to agree, it sounds like the plan in some areas of the country, will do little to address the age old problems with stigma. While I’m all for reducing the exposure risk, by utilizing safer injection sites, it does very little to reduce the opinions of people that are trying to understand why and how so many others end up with chronic HCV. People tend to put on blinders and fail to see the larger problem. We just keep trying, right? 

We need to keep up the good fight and do what we can, individually and collectively, to advocate and defend everyone living with this disease. Education and compassion is the key!

Here I am - fashionably late as usual!  Sorry for the delay Tig, work has been sending me all over the eastern seaboard since my return from the Summit. I fly out again tomorrow morning for what I hope is my last trip of the year but I wanted to take this moment to update you. I unfortunately did not see the other comments on this thread prior to going so I'm not sure if I met Pete or not but he probably saw me. Pete - I am one of the three who were there who were born with it. They had us stand up very briefly say something - for lack of an easier method of delineation, I was the white girl in that group.

As for my take on the summit as a whole, I was disappointed. It felt more like a Recovery summit with much of the discussion surrounding supporting safe injection sites and the like. The fact that the largest growing demographic of our club here is the IV drug users is not lost on me but HepC, the stigma, the ridiculous stipulations some venues places on access to treatment, etc goes beyond safe injection sites. A lot of focus was placed on the good things they are doing in places like San Francisco where mindsets are more liberal and pockets are larger. All great things but they don't translate to places like the mid-west or the conservative deep south. There was a belief among many that you could take the same programs that work in those liberal venues and apply them anywhere - this was simply evidence of the fact that people do not understand how geographical and cultural differences play a role in this issue.

I do think overall it was a good starting place. As Pete pointed out, there's a new sheriff in town and it seems that she wants to put in the work. I did enjoy meeting other patients as it was the first time I've ever been in an environment where I could speak freely about all aspects of HepC without any reservation of judgement. I also enjoyed meeting two other people who were born with it. One of them I had actually been communicating with online in other forums for some time now. He's an impressive person. He and I got the same message at the same time in our lives - dead by 30 or in need of a liver. Somehow I made it to 30 and beyond with all my original equipment yet he ended up with a transplant, right on time at age 30. It was eye opening to stand with him, someone my age, knowing he lived the very life I was warned of. The three of us all had very different paths to SVR but we all made it. The three of us are working on a collaborative article about our experiences in hopes of getting the word out about the importance of testing every adult, not just those with "risk factors". If you haven't heard yet the US Preventative Services Task Force recently released draft recommendations that all adults be tested - I can't tell you how many women I've spoken with who have admitted to not telling their children or not wanting to test their children because they are scared of what their children will think of them. So testing all pregnant woman is a good thing but it only helps the kids if their mothers tell them.

Lots of work to do!

Thanks for the update, Pete. It sounds like it was a good summit, with some knowledgeable individuals. I appreciate your commitment and sharing some information with us. 

Next time you‘re in Atlanta, you need to visit the Atlanta Aquarium. Wow! Well worth the visit. I have family up there and am always amazed by the enormity of that city.

Apologies for not getting back sooner. Was awaiting delayed post summit message from the NVHR.

It was an intensive, 2 day event with, alas, no time to check out Atlanta. Special thanks to the new leadership at the NVHR, including Anna Ford and Lauren Canary, the new Executive Director. Both exude professionalism and I'm hopeful they will breathe new life into an organization that is facing many difficult challenges.

I saw some familiar faces from over the years and want to give a shout out to Bill Remak, long time patient advocate from California and two time liver transplant recipient. Thanks for your tireless advocacy and friendship over the years.

Talked briefly with Lauren, a former CDC viral hepatitis official, about the CDC's viral hep surveillance, which remains inadequate. She told me they were upgrading their capacity. We also discussed viral hep funding in Mass. and elsewhere.

As for the bigger questions raised in the "Talking Points" post.. I sense that the pharmaceutical industry, which generously funds the NVHR, realizes the relying on the AIDS infrastructure to market HCV treatment may not have been a wise choice, and that playing favorites among disease interests does not engender trust from the HCV patient community. When they make the policy changes needed to level the playing field for grassroots HCV advocates, it will be a whole new ballgame - for them and us.

Lets give the NVHR and its new leadership time to get established and, if given the opportunity, bring positive change. There is a lot of work ahead and, as ever, it is critically important for patients/survivors to get active at the local, state, and national level to insure our voices are heard.

Due to the overwhelming interest  in the "Talking Points" post, I may post updates from time to time. Thanks.

-- Edited by Love22 on Thursday 15th of August 2019 11:24:19 AM

-- Edited by Love22 on Thursday 15th of August 2019 04:35:07 PM

Hey Pete,

Any updates on the summit? I’m anxious to hear what was presented. Thx.

I received a request from Pete, to repost some information and talking points sent to the Conference Coordinator, regarding the upcoming NVHR Summit, in Atlanta. Thanks, Pete! Have fun!!

***************************************************

NVHR Patient Summit Talking Points

Anna Ford, Conference Coordinator

1^st Annual NVHR Patient Summit

Hi Anna,

With the first patient summit looming, and the NVHR transitioning to new leadership, I want to share some candid observations from two decades in the trenches of HCV patient advocacy as possible talking points. Perhaps you’ll be kind enough to pass this along to summit patient committee members, and steering committee members and staff.

I attended the 2^nd annual NVHR national conference (I believe in 2004), but otherwise have not actively engaged with it because, like a lot of patients, I resisted the idea of viral hepatitis being ‘integrated’ into HIV/AIDS (“We are going to do for HCV what we did for AIDS” gushed AIDS lobbyists), a policy that institutionalized the subordination of HCV as a disease interest and assured HIV/AIDS continued dominance over infectious disease policy and funding. Fifteen years later, the nations now largest, deadliest CDC reportable killer remains an orphan epidemic despite the introduction of highly effective, tolerable, and curative daa’s beginning in 2013. If we triaged emerging infectious disease like we do national disaster casualties and emergency room visits, and focused our resources and attention where it does the most good for the most people, HCV should have surpassed HIV as a disease priority by 2007 based on mortality, yet people living with HCV remain the most visible casualties of AIDS exceptionalism, collateral damage in the war on AIDS.

AIDS advocates, who control the infectious disease agenda and funding, and public health officials here in Massachusetts cautioned me early on against playing the numbers game in advocating for a more aggressive response to HCV at the state and national level because it is “divisive” and provides ammunition to conservatives who don’t want to fund either AIDS or HCV. That works well for AIDS, but not so much for HCV. People with HCV, and those of us fortunate  survivors, did not create disparities in disease burden and funding; we are its victim. The figures speak for themselves and it would be foolhardy for patients or public health policy experts to allow politics to overshadow evidence-based considerations in setting disease priorities and funding. Yet it is done all the time.

The term ‘AIDS exceptionalism’ first appeared in an article in the NEJM in 1991 to denote the idea that AIDS required a response above and beyond normal interventions because of it’s lethal nature and the stigma associated with at-risk populations and primary modes of transmission. That was certainly true when I engaged in community-based HIV prevention initiatives, including unauthorized needle exchange, in New Haven, CT from 1988-1995. After the introduction of highly effective HIV treatments in the mid-90’s, the tide turned and an AIDS diagnosis was no longer a death sentence, yet AIDS exceptionalism lives on long after it’s rationale to exist faded. Worse, it’s become a black hole raking in $34.8 billion in total federal funding in 2019. I can’t find a comparable number for total federal viral hepatitis expenditures because there is so little. Perhaps the NVHR can venture a guess and speculate on whether it might be cost advantageous to re-adjust disease priorities and funding.

Just how bad the disparity in HIV vs HCV disease burden is depends, in part, on how mortality is defined, and the CDC cannot find the wherewithal to offer accurate data for either. With AIDS deaths ever declining, the CDC changed it’s mortality metric from AIDS deaths to HIV deaths, with the caveat that death “may or may not be related to HIV.” So if a person living with HIV dies of a heart attack - or HCV coinfection - it is considered an HIV death. With about 1.1 million people in the US living with HIV, which is highly treatable , and 12,333 HIV ‘deaths’ in 2014  (but only 6721 deaths attributed to HIV), HIV ‘deaths’ will continue to rise, while actual HIV attributed deaths decline, not because of HIV, but because the population will age and die of other causes.

Over 3 decades after the virus was clinically identified, the CDC still lacks a reliable surveillance program for the nations biggest reportable killer. HCV mortality is chronically underreported and the CDC acknowledged as much in the 2013 study by Mahajan, et al which concluded that HCV mortality may exceed 80,000 per year, a stunning revelation met by a collective yawn from disease policy experts and a media fixated on AIDS. The NY Times, during last years lavish coverage of gay pride month, ruefully noted that 558 death occurred before they ran a front page article about the AIDS epidemic. Hundreds of thousands, possibly over a million HCV deaths later, the Orwellian Times has yet to run a front page article about HCV. What makes one epidemic more “fit to print” than another? How can HCV advocates make the case for equitable and inclusive disease policy and funding when the epidemic is not only silent but censored?

The pharmaceutical industry gambled heavily on marketing HCV treatment through the AIDS treatment pipeline. That gamble has not paid off because the spin-off benefits never materialized. Gilead Pharmaceuticals, the nation’s biggest HIV and HCV treatment producer, introduced groundbreaking HCV treatments beginning in 2013. What should have been a prime opportunity to raise awareness about nation’s deadliest viral epidemic and ramp up treatment access became a public relations nightmare after the media exorcized it over $1,000 a pill pricing.  Competitors soon entered the market, prices fell, and the built up treatment demand ‘bubble’ was exhausted. Gilead’s impressive initial HCV treatment sales have dropped to less than 20% of it’s peak a few years ago, yet a huge, hidden treatment bubble remains largely untouched. Everyone living with HCV should have access to treatment on demand.

Gilead marked it’s long awaited HCV treatment breakthrough by increasing its AIDS donation by $40 million to $100 million in 2014, making it the second largest philanthropic global AIDS funder behind the Gates Foundation. Gilead did not respond to repeated requests for information on viral hepatitis philanthropic funding, or how much AIDS funding trickles down to viral hepatitis. Shareholders, and HCV patients, would be better served if Gilead and other industry giants invested profit derived from HCV treatment into HCV rather than AIDS. AIDS exceptionalism is undermining their capacity to expand the HCV treatment market and elevate viral hepatitis to it’s rightful place in the global disease hierarchy alongside AIDS, Malaria, and TB. The subordination of HCV as a disease interest also sets a dangerous precedent for future emerging infectious diseases. Is this really a model HCV patients, pharma, and the nation can afford in a time of dwindling public health funding?

Not all pharma PAC and so-called ‘dark’, hard to trace, funding goes to conservative causes. Ever adept at playing the ends against the middle, Gilead and several other industry giants are proud sponsors of the national Harm Reduction Coalition annual conferences, which in San Diego in 2016 included such corporate-friendly plums as a workshop on an anarchist response to harm reduction in the Pacific-Northwest, and a hastily arranged Q&A meeting with CDC officials to discuss viral hepatitis that was commandeered by transsexual health advocates with other priorities. Harm reductionists are fervent advocates and beneficiaries of AIDS exceptionalism, and weak on viral hepatis because the patient population is too old, white, male, and heterosexual to “fit the mold” as Tricia Lupole of HCVets, the nations leading advocate for military veterans hard hit by service-connected HCV, recently implied in an email to me. If the pharmaceutical industry is serious about growing the HCV treatment market, it makes sense to partner with grassroots patient advocates who will fight for more balanced and inclusive disease policy and funding; who believe that fair competition among disease interests is healthy, not divisive, and that free markets work best when they are truly free and not hostage to politically powerful and entrenched special interests.

Finally, with a presidential election approaching, and health care a campaign priority, HCV advocates have a unique opportunity to develop support for more inclusive and balanced disease policy and funding. Congressional hearings would provide an excellent forum to initiate a long over-due national discussion and engage the media:   

Democrats can explain how the nation’s deadliest viral epidemic slipped through the safety net while they courted favored constituencies and lost ‘despairing’  HCV votes to President Trump. Many veteran grassroots patient advocates were outraged when the Obama administration added $1.7 million to the CDC viral hepatitis budget in 2010, but stipulated that it go to AIDS organizations for outreach to gay and bisexual men. Obama’s stipulation was clearly political, not science based, and made while coyly fence sitting on the issue of gay marriage. Most HCV transmission, and HIV/HCV co-infection, occurs among people with injection drug use risk factors. Sexual transmission is “difficult” as the CDC tactfully notes.

Republicans can hold up HCV and HIV as examples of how things can go terribly wrong when tribalism, industry interests, and bad policy collide, and offer a solution beyond taking a page from the AIDS lobby’s identity playbook and authorizing $3 billion in VA funding to test and treat military veterans. It’s a good start, but there are over 5 million Americans living with HCV, including police, firefighters, EMTs, people who received blood transfusions and by-products prior to 1992, and, yes, those like me with a history of drug abuse, but decades in recovery, who deserve access to testing and treatment. Long portrayed as villians of public health, Republicans have an opportunity to be part of the solution, save lives, and earn voter support. Re-allocating even a small portion of federal and state AIDS funding to viral hepatitis and opioids would save thousands of lives and be a far wiser investment in public health.

For people living with HCV, survivors, and the nation as a whole, the fundamental question we must ask is whether our public health care system is so inflexible, censorious, and politicized that an injustice cannot be acknowledged and addressed - even by those who suffer the most. If we answer yes, then we’ve lost sight of core values that our nation was built upon. If we answer no, then we need to begin the long and arduous task of reconciling disparities in infectious disease policy and funding, and building a solid foundation that more equitably serves viral hepatitis and other emerging disease interests.

Thank you for your consideration. I look forward to meeting NVHR representatives and other patient advocates at the 1^st annual NVHR Patient Summit to share ideas on how to best move forward and do for HCV what HIV patient advocates did for AIDS.

Regards, Peter (Love22)

Hey Pete,

Welcome, sorry it took so long to reply. Kristen, whom started this discussion, is the only one of our forum members, aside from yourself that is going. It would have been interesting to have been part of your journey to Atlanta.

You touched on several important points, advocacy, funding and better access to treatment. All of them are much improved in the last few years, but there’s so much more that needs to be done. Funding for treatment is important, but I’m of the mind that these viruses won’t be stopped (even controlled) unless everyone afflicted with this disease is provided treatment on demand and at an affordable cost or free. These medications are dirt cheap to make, why does Big Pharma raise the prices to such astronomical levels? I would absolutely ask any and all Pharmaceutical reps what they’re going to do about it. Treatment MUST be made available without all the hoops to obtain it.

Advocacy? Absolutely! We’ve been doing it, promoting it and providing what we can, since 2007. We all are Warriors for this important cause and encouraging others to get involved still remains vital. There are so many voices across the Internet, providing a channel to them is very important. Sure it takes time and effort, but each connection makes a positive difference. You should encourage the discussion on the importance of accurate information. There’s a lot of people still living in the past and causing fear with poor or false information. It needs to stop. The work to stop the stigma of HCV is high on my list. People need to be educated when they spread inaccurate talking points on this. People shouldn’t be afraid to discuss it when they have it and certainly shouldn’t be shunned or ridiculed when they do.

Good luck on your trip and please share your knowledge there and with us when you get back!

I'm attending. Would be nice if there were some discussion among participants prior to arrival so that we can sort things it and it does not become a dog and pony show. Anyone else out there? What's your priorities? Strengthening advocacy? Funding? Treatment access? 

Pete

I would've loved to have been part of that. We could've gotten some of the group here together and really had a fun and educational get together. I know you'll be an excellent representative for all of us! If there are any goodies that we can use here, let me know and I'll send you my mailing address. See if they're going to continue this next year and maybe we can get in on it. I love those types of settings and the opportunities that can be shared. Good luck to you!

PS: I agree, the Cat car, lol!

Thank you for the kind words! And good luck on that trip. I can promise it's not one I'd want to make! However I'd choose the car with the cats over the kids!! Hahaha

I follow a Facebook group for HepC and someone had posted the link to that page. I completed the application and I was chosen. I have no idea how many people applied, I surmise they will delve into that more at the summit but they are flying everyone into Atlanta and putting us all up in a hotel.  I look forward to participating and will definitely report back afterward regarding what it was all about. 

That's great! I will look forward to hearing back from you on this. I'll be in the process of driving my daughter and grandchildren from here in South Florida to the Seattle area. Two cars, thousands of miles... middle of summer. Oh joy. I made that trip once in 89, when I moved from there to here. I never thought I'd make another drive like that! Oh, there's two cats, too. Help me, lol!

I have family in Atlanta, that would've been a very interesting trip to have attended. How were you so fortunate to be selected? Did you write another one of your powerful letters? Ha, ha! You're good at that. So please let us know what you hear and if we can be of any assistance to you at all, you know where to find us! What an opportunity to help all us Hepper's and former Hepper's!

https://nvhr.org/program/PatientSummit/

"The summit, NVHRs first national patient gathering, will bring together 100 patients cured of or currently living with HCV with an emphasis on those who have not had experience engaging in other advocacy programs. The Patient Summit will be a starting point for growing a grassroots movement to better address HCV in the US and centering the voices of patients in hepatitis elimination planning efforts."

Not much more to tell you yet but I was invited to be one of the 100 participants so I will report back after but it seems like it will be a good thing. 

I haven't been in the loop. What can you tell us about it? Very good to see you!

Hey all - anyone invited to the NVHR Patient Summit in Atlanta GA at the end of July?