Home Forums Melanoma Diagnosis: Stage IV Lobby for PD1: Here’s how

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  • #20620
    Catherine Poole
    Keymaster

    First find your representative (you NEED to find the one from your state!) here: http://www.usa.gov/Contact/Elected.shtml

    Call or email them, don’t write a letter there is a delayed process for mail. I would write about your personal experience with melanoma, and how this therapy is so promising, but the process for approval could slow down access for years. I would mention that both BMS and Merck have this drug with trials showing promising results. Rochelle, or others who recently did some of this lobbying may be able to give further instruction. Let us know if you get any results. I will write to my representatives as well. (Alan, it would help if you write and tell about how you are NED from PD1) As Margaret Mead said: Never doubt that a small group of thoughtful, committed citizens can change the world

    #56459
    alankravitz
    Participant

    With all due respect, this is probably the most difficult time to lobby: in the midst of a presidential election year. Then there is always the question of putting together the resources that are required for effective lobbying efforts.

    I do talk with the state and national candidates that I support both financially and with time and effort, but few regard the plight of cancer patients as a key issue that is going to help them gain or retain their office. It is, rather, the time to develop a political strategy, along with other lobbying groups, for both state and national action.

    Here in Ct. we need to get legislation passed regulating tanning bed use and I intend to put a great deal of effort into that project with people from AIM. At the national level, I intend to work on more sytematic ways to collect and aggregate information on trial results and the development of a more flexible process for drug approvals. Then there is the issue that we need to talk to candidates about right now: access to health care including reducing the cost of drugs. If we don’t address these issues now, we will continue to get drugs that neither the nation or those in need will be unable to afford .

    #56460
    pati
    Participant

    arghh just wrote a long response and I cannot find it, email me privately we have just written a melanoma white paper here is EU we are about to launch, I have an idea bout anti-PD1

    P

    #56461
    Catherine Poole
    Keymaster

    Actually Alan, it may be the best time to write your representative. And Tanning Bed legislation is frankly turned out to be a waste of time, as we have found there is NO agency to enforce the regulations in any of the states where it has passed. A law is useless without enforcement. I worked on it here in PA. I don’t know how that would help the PD1 effort. Efforts towards increasing NIH/NCI research funding are far more productive.

    Also, perhaps folks might want to write to the FDA in the U.S., here is their contact: http://www.usa.gov/directory/federal/federal-trade-commission.shtml

    Pati, I wondered about including something about your White Paper. I could try to upload it or is it still under wraps. I know there needs to be a global effort.

    #56462
    Jeroen
    Participant

    does anybody know when the anti-PD1 trials wil start in the EU and where exactly?

    im from the Netherlands and sofar i haven’t seen any info on anti-PD1 trials in our country or elsewhere in the EU.

    thanks in advance!

    by the way i wanna thank everybody on this forum for sharing all the information and stories. they definitely give me strength to beat this ugly disease!

    Greetings Jeroen

    #56463
    alankravitz
    Participant

    Tanning bed legislation doesn’t have anything to do with anti-Pd-1 but a lot to do with the incidence of melanoma and particularly the incidence among the young. The legislation pending in PA, Senate Bill 349, provides for state liscensing and inspection of tanning facilities. I haven’t read the record of testimony on the bill but it does seem to be fairly strong on the regulations side.

    #56464
    alankravitz
    Participant

    Pati, I recently read that the Scotch cost-effectiveness agency has decided against NHS payment for the BRAF inhibitor from Roche. I keep reading about the rejection of new melanoma drugs by these agencies throughout the world.

    We don’t have a real cost-effectiveness agency in the US as yet but it is coming. As long as we, as patients, don’t put pressure on big Pharma, they will continue to price new drugs in a manner that keeps producing these rejections. Firms need to be aware that their world-wide marketing efforts require pricing to the realities of those markets rather than just their development costs and the conditions that prevail in the US. This is a side of the fight against melanoma that most americans do not face and are not aware of.

    #56465
    Catherine Poole
    Keymaster

    Jeroen: PD1 may be starting in Paris with Dr. Robert. If Pati gets a chance (she heads our sister organization out of Brussels) she can possibly let you know about other locations. You might also look on: http://www.clinicaltrials.gov and put in your location and PD1.

    Alan, legislative efforts have failed to stop tanning bed use by youth or adults alike because there is no agency that enforces the law. We find that teaching peer pressure in the schools works far better.

    #56466
    Jonathan
    Participant

    What would a class action suit look like? Do we have any lawyers among us?

    Jonathan

    #56467
    Jeroen
    Participant

    Thx for the info Catherine.

    If u want u can give Pati my personal email-address.

    Hope to stay on Zel until the anti-PD1 is available nearby.

    Greetings Jeroen

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