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View Diary: Baby with HIV 'functionally cured' (46 comments)

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  •  sequester tie-in (1+ / 0-)
    Recommended by:
    sgary

    Batson Children's Hospital, in Jackson, where this treatment took place, receives significant funding from the Ryan White CARE Act, a federal HIV/AIDS program.

    In addition to directly funding health care, the program also funds things like social workers and outreach workers - who in this case appear to have played a key role in helping to bring this woman and her baby back into care after she had disappeared from the care system.

    We don't know much about the woman or her baby, but there is a good chance that - in addition to seeking health care in a Ryan White funded clinic - they may have also had their HIV drugs paid for through the Ryan White Title II AIDS Drug Assistance Program, a program that underwrites the cost of medications for low income people with HIV/AIDS

    The Ryan White CARE Act programs are considered "discretionary" and, as such, are being subjected to across the board cuts.

    Right now HRSA, the federal agency that administers the CARE Act, is distributing only partial payments to grantees (including countless clinics and hospitals like Batson Hospital) in order to comply with the sequester. As a result, more than 7,000 people across the country will lose access to life-saving medication treatments, clinics will face fund short-falls, and waiting lists for services will increase.

    And that doesn't even begin to address the impact on HIV/AIDS research from cuts at NIH (which funds many of the researchers who helped evaluate this case). Nor does it reflect the cuts to HIV/AIDS prevention and testing activities being cut back because of cuts at the CDC, or huge cuts to the already inadequate programs to help provide housing for people living with HIV/AIDS who are homeless or at risk for homelessness.

    You don't have to scratch very deep to find ways that the sequester has a real life impact on real people. This story is a good illustration and reminder of the central role that government programs play in protecting and advancing the health and well-being of everyone.

    My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world - Jack Layton

    by terjeanderson on Mon Mar 04, 2013 at 08:45:58 PM PST

    •  appears my partner will lose his HIV meds (1+ / 0-)
      Recommended by:
      terjeanderson

      that he gets thru ADAP because of sequestration.  We live in IA, which, at least until last year, was one of the 9 states with a waiting list.
      There is a chance they will find another funding mechanism, and fortunately, his co-pays were made 3 months in advance.
      I have been personally been rationing my own meds since 2010 when I got back on after a 2 year wait, with no discernible effects cd4 count-wise, so I can keep him going 6 months extra, if need be.
      I'm guessing there's plenty of others out there who will be affected by the cuts. Lots of us weren't planning long term back in the day.

      Open, but not gaping..

      by sgary on Mon Mar 04, 2013 at 09:42:38 PM PST

      [ Parent ]

      •  There are alternatives (1+ / 0-)
        Recommended by:
        sgary

        All of the drug companies have said they will provide coverage for anyone cut off of ADAP because of funding problems. It involves a lot of paperwork and jumping through some hoops, but it can be worth it. If not pursuing it already, I'd urge you and your partner to see if a local ASO or the state health department can help connect you with the appropriate contacts at the companies to apply.

        Some states (not sure about Iowa) are also stretching their ADAP dollars by using some of them to buy insurance coverage (including through the new high risk pools... faulty as they are).  It turns out to be more cost effecient than spending the money directly on drug purchases. Worth exploring if there might be eligibility. Also worth looking at Medicaid and other insurance options.

        You've been lucky if you've been rationing your meds with no ill-effect - it is the perfect invitation to a viral breakthrough, possibly with resistant virus.

        The fact that all of the AIDS programs are among those impacted by the sequester is maddening, and it is frustrating that it isn't getting more public attention for the outrage it is.

        My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world - Jack Layton

        by terjeanderson on Tue Mar 05, 2013 at 08:10:00 AM PST

        [ Parent ]

      •  I don't like the sound of this: (0+ / 0-)
        I have been personally been rationing my own meds since 2010 when I got back on after a 2 year wait, with no discernible effects cd4 count-wise, so I can keep him going 6 months extra, if need be.
        I hope you have discussed this with your doctor, because failure to adhere to your medication schedule can often result in resistance problems.  You say you haven't had an effects on your CD4 count, but what about your viral load?  That's where I'd expect to see evidence of a developing resistance problem.  

        If you can't get meds through ADAP, I'd strongly suggest investigating what the commenter below mentions -- getting meds through the drug companies.  It sounds like a royal pain in the ass, but your life is worth it.

        I'm keeping my fingers crossed for you.  Best of luck with this.

        "Ça c'est une chanson que j'aurais vraiment aimé ne pas avoir écrite." -- Barbara

        by FogCityJohn on Wed Mar 06, 2013 at 01:53:46 PM PST

        [ Parent ]

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