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NYS HCV Summit
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Jules Levin, NATAP
[By the way Jason Helgerson comments yesterday were misleading do not reflect the real costs for HCV drugs to NYS. He said HCV regimens cost 68k per regimen. NOT TRUE, he was referring to the retail cost before rebates, large rebates are provided by drug companies, the real cost is around $35k. And he did say this was the retail cost, but he neglected to say there is a big rebate so the numbers he quoted are not the real cost. But no one challenged him on this. And when he said the cost for medications last year to Medicaid was $650 million, not true, this was again a number that excluded the after rebate cost. Helgerson & other State officials were not challenged on any of this yesterday. ? NY AIDS Institute paid for the grant to put on the event, is that why they were not confronted? Are State advocates in bed with State officials? By throwing these deceptive numbers up that was Helgerson's way of putting up barriers to a State commitment to screening & linkage to care. Screening & linkage to care is the most important program needed in addition to treatment access, but this was not raised very strongly at the meeting. The meeting rolled out some State officials who did not say much and there was a sense of feel good & self congratulation among advocates for pulling off the event. There is no real commitment to challenge NY State officials nor an understanding of the real dynamics behind the scene & a willingness to for real confronting this. ]
This meeting was held yesterday in Albany, it was an all day event with a series of panels offering comments & discussion including John Ward from the CDC, NYS HCV epidemiology in NYS by Colleen Flannigan, the NYS Hep C Coordinator providing HCV epidemiology outside NYC, and most notably Jason Helgerson who is the Director of NYS Medicaid and pulls the financial strings. And the NYC HCV epidemiology was presented too. HCV advocates attended and several Wash DC HCV advocates including NVHR Director Ryan Clary, and Gloria Searson from C.O.P.E who were on a panel & spoke. They all gave great talks ! But - Of note there were 2 key revealing moments - Helgerson who I have conversed with his staff over the past 2 years, said the reason we can't have unfettered access to treatment is cost, the cost of the HCV drugs, he quoted a price of $68,000 for his cost of HCV drugs - he was not really challenged on this but I think one person from audience "meekly" asked him about this and I think Helgerson refused to answer the question about what was the true cost citing confidentiality - and he said he spent last year $670 million on drugs. In fact the price today has come down to $35k a year or lower even, in the VA its $17k. So I think he is avoiding the truth & avoiding spending the money needed for full access. 2nd key revealing moment - At the end of the meeting the recently retired as Director of the NYS AIDS Institute Dan O'Connell said the cost of NOT treating HCV needs attention, I think that was his indirect way of responding to Helgerson - and that is the truth it is much more costly not to treat where if patients get cirrhosis & advanced liver disease hospitalizations & care costs increase quite a lot. HCV treatment is a cure not like HIV, 30 years of HIV Care & Treatment costs $600,000 not to mention the tripling of costs for older patients who need multiple co-medications for comorbidities which far outstrip ART costs. HCV is curable with a one-time $35k. Helgerson said he was waiting for a "new HCV drug" to come out later this year that he hoped would reduce costs, he is apparently referring to Abbvie's ABT530+ABT493. But is he implying that the price of this will be less than $30k ? Is that what he set as his expectation to provide unfettered or unrestricted access to treatment? I have been in conversations with Helgerson's staff for 2 years now & they have always been saying the very same thing - they are waiting for the new drug with a lower price. Gilead as well has a new triple regimen with high cure rates also expected to be FDA approved later this year. In the pipeline is a triple drug regimen as well from J&J & Merck is in phase 3 about for their new HCV triple regimen. Eventually I think prices will continue to decline but will they ever be low enough for NYS Medicaid & other Medicaids in other States, that is the question? What is good enough? Will they ever be satisfied to the point to lift all restrictions, have unfettered access & fully fund screening, linkage & HCV Elimination Programs ?? That is the question. HCV is a stigmatized disease but curable ! If there were a cure for cancer or diabetes or heart disease I think Federal & State officials would find the political will to make treatment available to all. The fact is NYS & Helgerson do not want to pony up the money it would take to eliminate HCV, they could make the right deal with drug makers to do this but they don't. The question for Helgerson that did not come up yesterday was - doesn't the State have a responsibility to provide full access to treatment for all? And since HCV is curable - a plan to eliminate HCV? the answer is YES. Federal law requires full access to FDA approved medications, but NYS & other States mostly are not doing this. A recent spate of lawsuits have had a middling of success but things have not changed much, we do not have full access to HCV treatments. NYS simply does not want to spend the money !!! NYS does not want to make the commitment to eliminate HCV, but they are no different than any other State nor are they different from the Federal Government as they too are complicit in all this because they know what is going on & have done nothing to stop this. The Letter sent out from HHS had no teeth or affect on restrictions. In the end its the White House & Congress who are the decision makers & they have done nothing to address this. I estimate we need $30 mill to in earnest begin a NYS HCV Elimination Project but its a big commitment in all types of resources including the money, and so far Governor Cuomo & Helgerson refuse to make this commitment. So we will see what happens!
The question of HCV in African Americans came up yesterday, and yes it is obvious the disproportionate affect of HCV is among African Americans & Latinos too but the issue for Latinos was not raised yesterday. Though "heath disparities" was said a few times yesterday. The inner cities & for African Americans & Latinos is where HCV lives, and needs particular attention, especially in NYS. Of course we need to address as well the recent development of the growth of HCV in rural & suburban areas in NYS & throughout the USA. Baby boomers are older and at great risk for advanced liver disease unless they are treated quickly. The restrictions to access imposed by State Medicaids to which Federal officials are complicit prevent quick unfettered access to treatment.
On another point of epidemiology, there was quite a bit of discussion about HCV in young drug users, <30, and in baby boomers, in that the new development in the recent few years has been the growth of new HCV cases reported in young drug users & particularly in women of child bearing age from this group & in the significant increase in pregnant women who have HCV & the increase in HCV mother to child transmission. I have reported extensively about these developments over the past year. Clearly it was pointed out yesterday by Ann Winters the NYC epidemiologist - and those of us who have been working in HCV for a long time understand - but some do not - the prevalence of HCV in baby boomers is much greater than that in young drug users, by far - but this were more recent development of an increase in HCV among young drug users, among young women & women of child bearing age - some think this is greater than in baby boomers - NO. Colleen Flannigan yesterday in her talk said rates were higher in 20-39 age range - but this is "new Cases" rate not overall prevalence. We need to address both but we need to understand the differences. As John Ward said yesterday HCV in young drug users takes a different path than in baby boomers, for young drug users there is a greater concern for further transmission so prevention takes an important place, for older baby boomers we want to prevent advanced disease from setting in.
Jules Levin, NATAP
Consensus Statement on Hepatitis C Elimination in New York State
February 7, 2017
Download the PDF here
Pdf attached above
Several news reports, not a lot of coverage:
Health leaders call on lawmakers to eliminate Hepatitis C
Associated Press Published: February 7, 2017
ALBANY, N.Y. (AP) - Organizers of New York's first-ever Hepatitis C summit are calling on Democratic Gov. Andrew Cuomo and the state Legislature to wipe out Hepatitis C in the state.
Public health officials, elected leaders, medical experts and patient advocates released a statement at the Tuesday summit in Albany calling for an official task force to fight the chronic disease that afflicts more than 200,000 people in the state. The statement says New York's medical and research resources provide a solid foundation to enhance prevention, expand screening and provide access to affordable treatment. Hepatitis C is spread through contact with contaminated blood. The ongoing heroin and opioid epidemic has emerged as a new contributor to the spread of the disease. ---------------------
Hepatitis C kills more New Yorkers than HIV/AIDS


N.Y. officials on board to end hepatitis C
Destroying virus is possible, but high drug cost is major challenge
By Claire Hughes | February 7, 2017
A summit on hepatitis C kicked off Tuesday morning with strong support from New York officials for the goal of eliminating the virus, as new cases rise among young adults who are injection drug users.
"Together, we will eliminate hepatitis C," state Health Commissioner Howard Zucker said to dozens of government officials, health workers and activists assembled in a meeting room at the Empire State Plaza. "We have the technology, we have the expertise and we have the will to do it."
Patient advocates are urging state officials to address hepatitis C, a virus that affects the liver, similarly to the way they have targeted AIDS with the "End the Epidemic" campaign that aims to bring the number of new cases of HIV, the virus that causes AIDS, to 750 per year by 2020.
Hepatitis C is a blood-borne virus that can cause chronic infection of the liver and, in the worst cases, liver failure and death. An estimated 200,000 New Yorkers have chronic hepatitis C, with as many as half unaware they carry the virus, according to patient advocate VOCAL-NY. There were more than 16,000 reported new cases in 2014.
Baby boomers, age 53 to 71, are the most likely to have hepatitis C, but prevalence of the virus is growing among those age 20 to 40 amid an epidemic of heroin and opioid abuse. Increased rates of hepatitis C have also been seen among women and in the suburbs, consistent with populations affected in recent years by the opioid abuse epidemic. Along with the increased rates of illness, several speakers pointed to it being the right time to combat the virus, as drugs that cure hepatitis C have been brought to market in recent years.
But drugs that eliminate the virus can cost close to $100,000 for treatments [ from Jules: NOT TRUE - they cost NOW $17k in the VA and $35k in many Medicaids] lasting up to 12 weeks. Last year, it cost about $700 million for testing and medical services for New Yorkers with hepatitis C covered by Medicaid [said Jason Helgerson yesterday, the head of NYS Medicaid/Medicare]. [ from Jules: SO, we spend $10 Billion every year on domestic HIV just for Medicaid & Medicare, curing HCV is much less expensive but HCV does not have the political juice HIV has. Helgerson's assertions were left mostly unchallenged. What about that federal law requires all FDA approved medications be provided to all patients, recent lawsuits have not had the success we hoped for; simply NYS & Helgerson refuse to pay; but the cost of not treating greater because patients can progress to advanced liver disease & hospitalizations & liver transplants costs millions of dollars, Helgerson did not comment on that & he was not challenged directly on this yesterday].
Jeremy Saunders, co-director of Brooklyn-based VOCAL-NY, acknowledged that funding will be the challenge in accomplishing the group's goals.
"What we're seeing is growing political will," Saunders said of Tuesday's inaugural summit. "There will be a need for money to put behind it and policy as well." Zucker spoke Tuesday morning of hepatitis C priorities that echo the state's strategy against AIDS: enhancing prevention among high-risk groups, expanding screening tests and increasing access to affordable treatment for those who test positive. Arlene Gonzalez-Sanchez, commissioner of the state Office of Alcoholism and Substance Abuse Services, said hepatitis C treatment is part of care at the state's addiction treatment centers, where 11 percent of patients were found to have the virus last year. These were also among the key goals of the summit's steering committee, which included hospitals, universities, health departments, and community-based organizations.

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