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Author Topic: Access to HIV healthcare  (Read 2965 times)

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Offline GSOgymrat

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Access to HIV healthcare
« on: December 08, 2010, 03:31:40 PM »
What do people in the U.S. with HIV do when they lose their job and can't afford COBRA payments? Are there options for people who don't qualify for disability or ADAP?

Offline leatherman

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Re: Access to HIV healthcare
« Reply #1 on: December 08, 2010, 03:48:18 PM »
What do people in the U.S. with HIV do when they lose their job and can't afford COBRA payments? Are there options for people who don't qualify for disability or ADAP?
I think all the pharma companies have assistance programs now (co pay, reduced price, prescription card, etc), and many ASOs are able to help in obtaining meds.

Also dependent on how long you are unemployed (and/or the resources you have available), many people qualify quickly for assistance through different ASO programs, ADAP program, and social programs (ie welfare, medicaid). Realistically, you can only be unemployed so long before you begin to fall into the "poorer" categories and start to become eligible. So people usually only have a tough go for a few months in the transition from employed to unemployed to poor/eligible.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline AlanBama

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Re: Access to HIV healthcare
« Reply #2 on: December 08, 2010, 03:49:51 PM »
Please don't tell me that you've lost your job honey....

Not sure who might be able to help in such a case....maybe someone will have some answers.

 :'(
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Oceanbeach

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Re: Access to HIV healthcare
« Reply #3 on: December 08, 2010, 04:05:47 PM »
My employer gave me the ax with no healthcare and no COBRA unless I paid it in advance.  I went without healthcare until my AIDS diagnosis and hospitalization with PCP.  Medicare and Medi-Cal covered the $36,000 hospital stay and every cost since.   ;D  Have the best day
Michael

Offline GSOgymrat

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Re: Access to HIV healthcare
« Reply #4 on: December 08, 2010, 04:24:17 PM »
So people usually only have a tough go for a few months in the transition from employed to unemployed to poor/eligible.

That is not encouraging.

Please don't tell me that you've lost your job honey....

Not sure who might be able to help in such a case....maybe someone will have some answers.

 :'(

No. I'm lucky that my job is very secure. I was talking with someone who is going to lose his job due to downsizing and was wondering what options are available. I was hoping there were options other than reaching the poverty level. He is going to contact the ASO.

My employer gave me the ax with no healthcare and no COBRA unless I paid it in advance.  I went without healthcare until my AIDS diagnosis and hospitalization with PCP.  Medicare and Medi-Cal covered the $36,000 hospital stay and every cost since.   ;D  Have the best day
Michael

That is just maddening. You have to destroy your immune system and risk death before you can get help. I really hate our healthcare system.

Offline jkinatl2

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Re: Access to HIV healthcare
« Reply #5 on: December 08, 2010, 04:49:29 PM »

That is just maddening. You have to destroy your immune system and risk death before you can get help. I really hate our healthcare system.


That is the long and short of it. Pharma companies often help, ADAP exists, albeit with waiting lists in many places. The hoops one has to jump through to get SSI are many, and owning anything of real value (home, car, etc) is often a roadblock.

For those who are financially solid, and have reliable (and good) insurance, HIV meds are not too much of an issue (they can, of course, be expensive even with co-pays). And for those who are destitute, agencies exist that can facilitate meds and health services. For anyone in between, it truly can be a horror show.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Oceanbeach

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Re: Access to HIV healthcare
« Reply #6 on: December 08, 2010, 05:21:02 PM »
I saw a copy of my hospital bill... It cost $60.00 for a technician come into my isolation room to plug in oxygen.  The paper shoes they gave me cost $6.00, the plastic razor, each Tylenol, a tooth brush and a free sample of toothpaste were all billed at $6.00 each.  St. Mary's Medical Center in Long Beach was the first non-profit to offer medical care for HIV in California and widely copied throughout the U.S....   ;D  Have the best day
Michael

Offline leatherman

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Re: Access to HIV healthcare
« Reply #7 on: December 08, 2010, 05:29:46 PM »
And for those who are destitute, agencies exist that can facilitate meds and health services. For anyone in between, it truly can be a horror show.
as many can attest, this situation has been the normal for decades as just waiting to have approval for your SS disability case is easily a 3-6 month period of heading towards and becoming destitute.

like Choof, it was landing in the hospital with PCP, becoming financially destitue with my physical health destroyed, that finally got me, not only some financial assistance, but the medical assistance that I desperately needed.

I'm glad to hear it's not you in these straits; but sorry to hear that it's happening at all to yet another person. Have him contact an ASO to get started ASAP on working on any contingency plans. He still might have a helluva time; but the sooner he gets on the right list, the sooner help will make it's way to him.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jkinatl2

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Re: Access to HIV healthcare
« Reply #8 on: December 08, 2010, 06:10:56 PM »
I agree w/leatherman, and am glad it is not you in this situation GSO - though you are absolutely in a terrific position mentally and career-wise to handle it. I honestly think that preparing for possible contingencies or at least being aware of services that exist and roughly how to access them if needed should be stressed in the US as much as finding the right doctor and choosing the right meds.

I remember a web site from over a decade ago, one of the very first I ever found after testing positive, what dealt with  what was then the harsh reality of anyone living with HIV. It did so in a straightforward, no nonsense, almost bullet-point manner.

One of the bullet points was simply "Prepare to be poor." It went on to say that the treatment needed for living with HIV (and there was barely such a thing, then) required a level of service that was only found among the very well employed/financially secure and the absolute poor, and that there was really no way to survive in the middle.

I wish things were very different now, and they ARE better than they were (pharma assistance, ADAP, COBRA, and the like) but not what we need, not by a long shot.

I hope your friend gets into an ASO's care as soon as he can.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline leatherman

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Re: Access to HIV healthcare
« Reply #9 on: December 08, 2010, 07:04:03 PM »
One of the bullet points was simply "Prepare to be poor."
somewhere packed away, with docs from my two deceased partners, are some of my original doctor and social services info papers. I remember "Prepare to be poor" being a bullet point on one doc, with points later on about needed signing end-of-life medical documents and another one about making funeral arrangements. (I would go find that doc but it's just not the time of year to be sorting through and dealing with the emotions of looking through that kind of paperwork. Shoot! Really there's probably never any good time of year to stroll down that memory lane ;) )

Just like the ADAP-funding med-access rallies I attended this year reminded me of ACT-UP med-access rallies I attended 20 yrs ago, although some things haven't changed (HIV having a strong relationship with poverty and med-access), we're still better off now - even if there is still have a long way to go.

(oops! probably should have posted all that in an LTS thread LOL)

good luck to your friend, and keep us updated about what happens with your friend , G-Rat.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Assurbanipal

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Re: Access to HIV healthcare
« Reply #10 on: December 10, 2010, 04:01:46 PM »
First, check with the ASO since every State and some cities have assistance programs with different options

Second, make sure he gets a referral for assistance with unemployment.

Third, maximize any ability to stockpile drugs while he is still covered by insurance (many plans allow 3 months of drugs if you use mail order -- this can help tide over a temporary period of lack of coverage -- it may make sense to pay for one month of COBRA if that is needed to get 3 months of drugs)

Four, check out the patient assistance programs at the websites for the manufacturers of his drugs.

Fifth, start looking for a new job right away -- employers like hiring people with jobs more than they like hiring people without them -- that preference has diminished a little in the recession, but it is still there.


Good luck to your friend.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline MitchMiller

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Re: Access to HIV healthcare
« Reply #11 on: December 11, 2010, 12:41:30 AM »
A lot of us opt to use generic meds.  WAY cheaper and have been working well for me now for nearly seven years (on brand name one year - generics nearly 7 years).

My fear is the US Govt will use the recent terrorist UPS scare to start seizing my meds when they pass through customs.  GWBush did this for a few months until the elderly raised hell over it.
« Last Edit: December 11, 2010, 12:45:40 AM by MitchMiller »

Offline freaky_dream

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  • mmm
Re: Access to HIV healthcare
« Reply #12 on: December 23, 2010, 05:39:29 AM »
From the California ADAP site:
Quote
You may be eligible for California ADAP services if:

    * You are a resident of the State of California
    * You are at least 18 years of age
    * You have an HIV diagnosis (ADAP will only process prescriptions written by a licensed California physician/prescriber)
    * You have limited or no prescription drug benefit from another source
    * You have a Federal Adjusted Gross Income of not more than $50,000. (To determine your Federal Adjusted Gross Income, refer to your income tax forms or visit www.irs.gov)


I am sure other states have similar qualifications since ADAP is a federal program administered by local authorities. Check with your local ASO/ADAP regarding local requirements.

Offline leatherman

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Re: Access to HIV healthcare
« Reply #13 on: December 23, 2010, 10:53:43 AM »
I am sure other states have similar qualifications since ADAP is a federal program administered by local authorities.
You are very right in saying that you have to check with your state to know the full requirements. Although ADAP is a federal program, because it is federally AND state funded, it is state run. Because many states are having budget issues, nearly half the states (21) have been changing/restricting access.

Some states have made changes by:
not helping anyone else but by establishing waiting lists (4,543 individuals in 9 states, as of December 9, 2010) ; reducing formulary; lowering financial eligibility to 200% to 350% FPL (at least 6 states have lowered eligibility to only those earning $22k to $32 or less); capping enrollment; instituting expenditure cap; discontinueing reimbursement of laboratory assays; instituting client cost sharing; only covering antiretrovirals and opportunistic infection medications; and plain ol' throwing people to the wolves by disenrolling clients.

(the latest information from all the states can always be found at NASTAD.org in their "hot off the press" links to the right)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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