[Ip-health] Ip-health Digest, Vol 76, Issue 3
hilary at healthgap.org
Thu Aug 4 13:59:41 PDT 2016
Project Inform has been a strong advocacy group since 1985 for PLWHA,
founded by Martin Delaney, and was one the first HIV groups to commit to
taking on HCV. I understand your distrust of any group that takes pharma
money, but to dismiss their concerns solely on that basis without thinking
through any merit of their concerns would be a mistake, they have an
excellent team that have been at this work a long time, and they are not
some newly formed patient group shell set up by pharma. Same with the SF
On Thu, Aug 4, 2016 at 3:00 PM, <ip-health-request at lists.keionline.org>
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> Today's Topics:
> 1. California Drug Price Plan Is Criticized by Patient Advocates
> (Claire Cassedy)
> 2. Re: California Drug Price Plan Is Criticized by Patient
> Advocates (George Carter)
> Message: 1
> Date: Wed, 3 Aug 2016 15:47:44 -0400
> From: Claire Cassedy <claire.cassedy at keionline.org>
> To: ip-health at lists.keionline.org
> Subject: [Ip-health] California Drug Price Plan Is Criticized by
> Patient Advocates
> <CANThLpzZ7TTns9Yo09DbigbzsJ_TT8CtY9u+zoVG1hCDLwFydg at mail.
> Content-Type: text/plain; charset=UTF-8
> California Drug Price Plan Is Criticized by Patient Advocates
> By ANDREW POLLACK JULY 4, 2016
> LOS ANGELES ? A state ballot initiative meant to lower prescription drug
> prices for California faces an expected opponent: the pharmaceutical
> industry, which has spent almost $70 million to defeat it.
> But concerns are also coming from a more curious source: some patient
> advocacy groups.
> Called the Drug Price Relief Act, or Proposition 61, the proposal would
> prohibit state programs, such as California?s Medicaid, from paying more
> for a drug than the lowest price paid by the federal Department of Veterans
> Affairs, which typically receives big discounts.
> It promises to be the most prominent measure in November?s election to deal
> directly with pharmaceutical prices. And because the effort is happening in
> California, the most populous state and a trendsetter, the approach could
> quickly spread to other states if it is approved.
> Yet how much, if any, money would be saved is a matter of hot debate,
> highlighting the complicated world of drug pricing. In recent weeks, there
> has even been a nasty spat between some AIDS activists ? who say the
> proposal might inadvertently lead to price increases ? and Senator Bernie
> Sanders, the Democratic presidential hopeful, who supports the measure.
> ?We agree with the proponents that we need to do something, but we just
> don?t think this is it,? said Anne Donnelly, director of health care policy
> at Project Inform, an advocacy group based in California for people with
> H.I.V. and hepatitis C. ?It doesn?t appear to save the State of California
> perhaps any money, and it could have some negative effects.?
> Drug prices have become a big public concern and an issue in the
> presidential campaign, in part because of huge price increases on
> decades-old drugs by Valeant Pharmaceuticals and Turing Pharmaceuticals,
> the company founded by Martin Shkreli. A furor also arose over the $1,000 a
> pill that Gilead Sciences charged for its hepatitis C drug Sovaldi, which
> strained health care budgets. And list prices for a huge number of drugs to
> treat various conditions increase 10 percent or more each year.
> Still, federal legislation to address drug prices is considered unlikely in
> an election year. So some proponents of greater action have turned to
> In June, Vermont enacted the nation?s first so-called pharmaceutical cost
> transparency bill, which will require drug companies to justify certain big
> price increases.
> Last Tuesday, the California Assembly?s health committee approved a bill,
> already passed by the State Senate, that would require drug makers to give
> advance notice of big price increases and to justify them. Several other
> states have cost transparency bills, though most have not gotten very far.
> In Ohio, a voter initiative similar to the one in California has been
> caught up in litigation filed by the pharmaceutical industry and other
> business groups and might not make it to the ballot in November.
> Supporters of the California proposal, including the California Nurses
> Association and the California branch of AARP, say it could save the state
> several hundred million dollars a year on the more than $4 billion it now
> spends on medicines for about five million to seven million people.
> Proponents also say it might spur private insurers to seek bigger discounts
> as well.
> ?We believe it will have an overall effect of lowering prices across the
> board for all payers,? said Michael Weinstein, president of the AIDS
> Healthcare Foundation, which sponsored the initiatives in California and
> Pharmaceutical companies, worried about a precedent being set, have
> contributed $68.5 million to the opposition campaign, which calls itself
> Californians Against the Misleading Rx Measure. That swamps the $4.4
> million contributed in support of the measure, virtually all from the AIDS
> Healthcare Foundation.
> ?It?s a fairly straightforward expansion of price controls,? said Stephen
> J. Ubl, president of the Pharmaceutical Research and Manufacturers of
> America, the industry?s main lobbying group.
> Concerns about the measure center on how it would actually work and whether
> it could even be put into practice.
> The California Public Employees? Retirement System, which spends nearly $2
> billion a year on drugs and would be affected by the measure, said the
> proposal ?might possibly provide cost savings? but could disrupt the
> contracts the group already had with pharmacy benefit managers and would be
> hard to administer.
> The California Medical Association, which represents doctors, called it
> ?deeply flawed and unworkable.?
> One concern is that if drug companies are forced to lower prices for state
> programs, they might try to raise the prices they charge Veterans Affairs
> and commercial health plans.
> ?Veterans are special,? Mr. Ubl, of the pharmaceutical trade organization,
> said. ?To the degree the veterans population becomes a larger population, I
> think it undermines the economics of the situation.?
> Another issue is that the rebates and discounts offered by drug companies
> are typically confidential, making it difficult to determine whether a
> state agency is paying less than Veterans Affairs. The state Legislative
> Analyst?s Office said the impact of the proposal was ?highly uncertain,? in
> part because of the opacity of drug prices.
> ?You?re taking one set of numbers where there?s no transparency and another
> set of numbers where there?s no transparency and trying to compare them,?
> said Tim Horn, H.I.V. project director for the Treatment Action Group, an
> advocacy organization.
> Veterans Affairs tends to pay the lowest prices for drugs, in part because
> it gets mandatory discounts under federal law. A report by the
> Congressional Budget Office in 2005 said the department was paying on
> average 42 percent of list price for name-brand drugs while Medicaid was
> paying 51 percent. The gap between Veterans Affairs and Medicare or private
> insurers is even bigger.
> Proponents of the measure have filed Freedom of Information requests to
> bolster their case that price information can be obtained. They also say
> that it would be difficult for pharmaceutical companies to raise the prices
> they charge Veterans Affairs, and vindictive if they were to do so.
> Sniping over the California measure intensified after Senator Sanders met
> with 19 AIDS activists in San Bernardino in late May and then issued a news
> release praising the initiative. The activists said Mr. Sanders had falsely
> implied that they endorsed the measure when they had reservations about it.
> The campaign in favor of the ballot initiative then accused the AIDS
> activists of ?shilling for Big Pharma.?
> Mr. Weinstein and the AIDS Healthcare Foundation have long been at odds
> with other AIDS advocacy groups. For instance, he has run almost a one-man
> campaign against use of a Gilead drug to prevent H.I.V. infection,
> something some other activists support.
> The nonprofit AIDS Healthcare Foundation runs treatment centers in many
> states and countries. It had about $1 billion in revenue last year, $800
> million of which came from pharmacies it operates, which can mark up prices
> on the drugs they provide to patients.
> Mr. Weinstein is a vocal critic of Gilead, the leading supplier of drugs
> for H.I.V. and hepatitis C. He recently had a caravan of vehicles,
> including a hearse, pass by an investor conference where Gilead was making
> a presentation. A plane flew overhead towing a banner that read ?Gilead
> Greed Kills.?
> Calling attention to pharmaceutical industry ?greed? is a crucial strategy
> of the campaign in favor of the proposition, as illustrated by its website,
> It also points out that many opponents of the measure ? including some
> politicians and doctors, and the AIDS advocacy groups that raised questions
> ? receive money from the industry.
> Ms. Donnelly of Project Inform, the AIDS advocacy organization, said the
> accusation was ?an unfair attack designed to obfuscate poor policy.? She
> says that while her organization receives some money from drug companies,
> it often takes positions unfavorable to the industry.
> Public opinion polls by third parties have not yet been taken on the
> initiative. Early polls often mean little in any case. Generally,
> industries have succeeded when they have spent huge amounts to defeat
> ballot initiatives in California.
> In 2005, drug companies beat back a measure that would have essentially
> required discounts on medicines for some Californians.
> Message: 2
> Date: Wed, 03 Aug 2016 16:31:29 -0400
> From: George Carter <fiar at verizon.net>
> To: Ip-health <ip-health at lists.keionline.org>
> Subject: Re: [Ip-health] California Drug Price Plan Is Criticized by
> Patient Advocates
> Message-ID: <DD6CBE9F-1957-4B3F-96C5-91CB0089D507 at verizon.net>
> Content-Type: text/plain; charset=utf-8
> I?m sorry but Project Inform is hardly an ?advocacy? group. Look at their
> tax forms. Why in 2015, they took $250,000 JUST FROM GILEAD.
> Excuse me if I find their distaste for anything AHF to have spilled over
> into the silly and in service of pharma. They?ve ceased being the slightest
> bit credible in my eyes.
> Will the bill solve all the problems? Of course not, but it may also FORCE
> more transparency into all these nefarious drug price negotiations.
> George M. Carter
> > On Aug 3, 2016, at 3:47 PM, Claire Cassedy <claire.cassedy at keionline.org>
> > http://www.nytimes.com/2016/07/05/business/california-
> > California Drug Price Plan Is Criticized by Patient Advocates
> > By ANDREW POLLACK JULY 4, 2016
> > LOS ANGELES ? A state ballot initiative meant to lower prescription drug
> > snip..
> > ?We agree with the proponents that we need to do something, but we just
> > don?t think this is it,? said Anne Donnelly, director of health care
> > at Project Inform, an advocacy group based in California for people with
> > H.I.V. and hepatitis C. ?It doesn?t appear to save the State of
> > perhaps any money, and it could have some negative effects.?
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> End of Ip-health Digest, Vol 76, Issue 3
Director of US Government Policy and Grassroots Mobilization
Health GAP (Global Access Project)
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