HIV Funding - How much do you know?

[Teallaura]

Before I start out with any real detail, I'm curious as to how much people really know about how funding for HIV Direct Care is allocated? I will go ahead and tell you that Prevention and Direct Care are separate programs and funded in different funding streams. They are also exactly what they sound like - Prevention deals with trying to prevent spread and Direct Care deals with getting people the case management, medical and drug care (amongst others) they need once infected. But do you know how the dollars are allocated and what formulas determine where the money goes? What happens after Congress and state legislatures allocate the moneys for Direct Care?
It's an important question, but I ask that you take my word on that initially, as I'd like to see what people think the process looks like - or should.
Thanks!

[Teallaura]

Thanks to those who voted! :smile:

Okay, here goes.
This is just an over view of the system (the whole system comes with big book full of little instructions! :teeth:).
Federal and state allocations are made to the state Department of Public Health. The Health Department then distributes the funds in one of two ways: 1) to a statewide consortia or 2) to a local set of consortium, with each being allocated according to their case numbers. The consortia (either type) then use an agency to handle the bookkeeping and make the final allocation, per consortia instructions, to the AIDS Service Organizations (ASO's). ASO's then provide the actual services, or contract them out.
Contrast that to a disease like TB: Federal and State allocations go to the Health Department which then provides the service or contracts it out (rare nowadays). With no travel (not currently provided), no secondary fiscal agent and no ASO's, the TB system runs a great deal more efficiently - i.e. more dollars go straight into care.
So why consortia in HIV? The purpose is to give the community a direct say in how dollars are spent in their communities. The actual allocation (how much the consortia gets) is based on new cases, which has been a historic problem for funding. Many new cases are diagnosed in large urban centers, but as people get sick, they often go home, not infrequently to die, but also to receive care. All the funding generated by that case stays with the state/consortia in which the patient was diagnosed. The burden (high end expenses) come as their health begins to decline, so states with fewer new cases end up burdened with the expenses of caring for the genuinely sick.
The problem is getting much worse. Federal Ryan White dollars (the name of the program which creates the consortia system) are drying up, both as deficits rise, conservatives fund other priorities and as other disease advocates have ceased to 'take a back seat' in terms of lobbying to HIV. Unlike many diseases, including TB, heart and lung diseases, and breast cancer to name a few, HIV is completely preventable and both lawmakers and other advocates are losing patience with a problem that continues at high infection rates and extremely high costs.
It's not that they don't want HIV infected people to be able to receive services, but that the combination of effective management and lower mortality rates have taken the 'sting' out of HIV - people are no longer terrified of it and that is reflected in the political climate. Other disease programs which willingly allowed HIV to take the forefront twenty years ago are no longer convinced that it is necessary and are beginning to see acquiescing to HIV as failing to advocate fully for their own patients.
So, what does this translate to? Last year, for the first time ever, my state actually pulled people off of ADAP - the program that supplies funding specifically for HIV drugs (separate from consortia funding). The ASO's scrambled like crazy to find other sources (pharmaceutical companies will provide limited amounts for some cases free of charge - we maxed that in under a month), and to identify the patients who would not be negatively impacted by removal - and to their credit, they succeeded, this time. But at the same time this was happening, we had 200+ people on a waiting list for ADAP. The system is straining folks, straining pretty badly.
It costs around $12000 a month (sometimes less, sometimes more) for drugs alone - no case management, no doctor, no clinic, no dentist (yep, we fund a limited amount of dental care in certain cases), no testing (viral loads, et al) nothing else at all. The consortium are being restricted in what and how they can fund (more so than previously, of course). Some of that belt tightening is good and should have been done long ago (things like housing and transportation that can be funded elsewhere), but it's just the beginning. The money isn't there like it used to be, and is unlikely to come back to previous levels.
In the meantime, we're seeing increased resistance to AIDS drugs - and those strains are being passed on, limiting the treatment options for newer cases. Infection rates aren't dropping - in fact they've begun to climb again. The greatest increase in infection rates is in AA female (STD facilitates HIV infection and STD historically follows poverty), but the greatest number of cases is still MSM - and it's begun to climb again.
If infection rates don't drop, or funding isn't increased (or drug costs don't plummet - don't bet on that one), there's a train wreck a comin'. We won't have the money to supply meds to moderately sick people, who will quickly become critically sick people. Even that is only a stop gap if resistance goes unchecked - and dropping the infection rate can and will do just that. Unless we see a real drop in infection, even with increased funding, we'll start to see climbing mortality as drugs no longer work. Anti-biotic resistance is already a real problem in other diseases and antibiotics are much easier to develop than the anti-retrovirals that HIV patients need.
In another thread (which I lost track of, sorry!) someone accused me of thinking patients shouldn't be treated because I mentioned the high cost of drugs as one of the societal costs of HIV infection - one of the reasons we need to see a real decrease in infection rates. In the real world, politicians focus on what’s important to their constituencies. As other disease advocates lobby more strongly for their patients, the pie gets smaller as there is only so much political will to use the Federal/state governments to fund all manner of medical research (and we fund a tremendous amount) let alone extremely high cost drugs for a completely preventable disease. The money is going to go away - not completely, but certainly never again to its previous levels and the strain is already showing.
Eliminating the consortia system will help, but that, too, is only a stopgap. Altering funding formulas to follow the patient would be wonderful, but is politically unworkable (confidentiality issues). Increasing funding would be nice, but the tax increases necessary (or the cuts in spending elsewhere) aren't politically palatable yet - if they ever are. The obvious and best prong is to attack the infection rate - stop people from getting HIV in the first place and they don't need the expensive drugs/medical care - and the system can adapt.
So, what do you think?




____
*FYI - I served 22 months as the Chair for our local consortia and I chair the steering committee for our new statewide consortia. I've been involved in consortia and CPG (Community Planning Groups - Prevention) for eight years.

[Conductor42]

How about we stop abusing the AIDS myth?

http://www.aliveandwell.org/

[Teallaura]

It's no myth - and you're credulity is showing.

[parlie]

HIV infection is preventable. Knowledge about HIV is an important aspect of prevention. Parents should educate their children and also work closely with schools, churches, youth organizations, and health care professionals to ensure that children and teens receive sex education and preventive drug abuse courses which include material on HIV. many drugs available in market for HIV infection just like..Ziagen drugs.
http://www.drugdelivery.ca/s3804-s-Ziagen.aspx
you could use this medicine for HIV infection.Ziagen is used with other drugs for the treatment of HIV infection.

Advertising is not permitted on theologyweb. Please read the rules you agreed to when you registered to post here. Thanks. ~ Pilgrim

[semmie'ssister]

Thanks to those who voted! :smile:

Okay, here goes.
This is just an over view of the system (the whole system comes with big book full of little instructions! :teeth:).
Federal and state allocations are made to the state Department of Public Health. The Health Department then distributes the funds in one of two ways: 1) to a statewide consortia or 2) to a local set of consortium, with each being allocated according to their case numbers. The consortia (either type) then use an agency to handle the bookkeeping and make the final allocation, per consortia instructions, to the AIDS Service Organizations (ASO's). ASO's then provide the actual services, or contract them out.
Contrast that to a disease like TB: Federal and State allocations go to the Health Department which then provides the service or contracts it out (rare nowadays). With no travel (not currently provided), no secondary fiscal agent and no ASO's, the TB system runs a great deal more efficiently - i.e. more dollars go straight into care.
So why consortia in HIV? The purpose is to give the community a direct say in how dollars are spent in their communities. The actual allocation (how much the consortia gets) is based on new cases, which has been a historic problem for funding. Many new cases are diagnosed in large urban centers, but as people get sick, they often go home, not infrequently to die, but also to receive care. All the funding generated by that case stays with the state/consortia in which the patient was diagnosed. The burden (high end expenses) come as their health begins to decline, so states with fewer new cases end up burdened with the expenses of caring for the genuinely sick.
The problem is getting much worse. Federal Ryan White dollars (the name of the program which creates the consortia system) are drying up, both as deficits rise, conservatives fund other priorities and as other disease advocates have ceased to 'take a back seat' in terms of lobbying to HIV. Unlike many diseases, including TB, heart and lung diseases, and breast cancer to name a few, HIV is completely preventable and both lawmakers and other advocates are losing patience with a problem that continues at high infection rates and extremely high costs.
It's not that they don't want HIV infected people to be able to receive services, but that the combination of effective management and lower mortality rates have taken the 'sting' out of HIV - people are no longer terrified of it and that is reflected in the political climate. Other disease programs which willingly allowed HIV to take the forefront twenty years ago are no longer convinced that it is necessary and are beginning to see acquiescing to HIV as failing to advocate fully for their own patients.
So, what does this translate to? Last year, for the first time ever, my state actually pulled people off of ADAP - the program that supplies funding specifically for HIV drugs (separate from consortia funding). The ASO's scrambled like crazy to find other sources (pharmaceutical companies will provide limited amounts for some cases free of charge - we maxed that in under a month), and to identify the patients who would not be negatively impacted by removal - and to their credit, they succeeded, this time. But at the same time this was happening, we had 200+ people on a waiting list for ADAP. The system is straining folks, straining pretty badly.
It costs around $12000 a month (sometimes less, sometimes more) for drugs alone - no case management, no doctor, no clinic, no dentist (yep, we fund a limited amount of dental care in certain cases), no testing (viral loads, et al) nothing else at all. The consortium are being restricted in what and how they can fund (more so than previously, of course). Some of that belt tightening is good and should have been done long ago (things like housing and transportation that can be funded elsewhere), but it's just the beginning. The money isn't there like it used to be, and is unlikely to come back to previous levels.
In the meantime, we're seeing increased resistance to AIDS drugs - and those strains are being passed on, limiting the treatment options for newer cases. Infection rates aren't dropping - in fact they've begun to climb again. The greatest increase in infection rates is in AA female (STD facilitates HIV infection and STD historically follows poverty), but the greatest number of cases is still MSM - and it's begun to climb again.
If infection rates don't drop, or funding isn't increased (or drug costs don't plummet - don't bet on that one), there's a train wreck a comin'. We won't have the money to supply meds to moderately sick people, who will quickly become critically sick people. Even that is only a stop gap if resistance goes unchecked - and dropping the infection rate can and will do just that. Unless we see a real drop in infection, even with increased funding, we'll start to see climbing mortality as drugs no longer work. Anti-biotic resistance is already a real problem in other diseases and antibiotics are much easier to develop than the anti-retrovirals that HIV patients need.
In another thread (which I lost track of, sorry!) someone accused me of thinking patients shouldn't be treated because I mentioned the high cost of drugs as one of the societal costs of HIV infection - one of the reasons we need to see a real decrease in infection rates. In the real world, politicians focus on what’s important to their constituencies. As other disease advocates lobby more strongly for their patients, the pie gets smaller as there is only so much political will to use the Federal/state governments to fund all manner of medical research (and we fund a tremendous amount) let alone extremely high cost drugs for a completely preventable disease. The money is going to go away - not completely, but certainly never again to its previous levels and the strain is already showing.
Eliminating the consortia system will help, but that, too, is only a stopgap. Altering funding formulas to follow the patient would be wonderful, but is politically unworkable (confidentiality issues). Increasing funding would be nice, but the tax increases necessary (or the cuts in spending elsewhere) aren't politically palatable yet - if they ever are. The obvious and best prong is to attack the infection rate - stop people from getting HIV in the first place and they don't need the expensive drugs/medical care - and the system can adapt.
So, what do you think?




____
*FYI - I served 22 months as the Chair for our local consortia and I chair the steering committee for our new statewide consortia. I've been involved in consortia and CPG (Community Planning Groups - Prevention) for eight years.


wow. I didn't know all that.

[themuzicman]

To what extent is AIDS treatment effective in extending the lives of those infected?

[Teallaura]

Sadly, that depends on the patient. In a well compliant patient it can be very significant - the longest have been 20+ years. But non-compliant patients run through meds faster (they create resistance) and run out of options. Or they don't come in enough to get the meds changed - in either case the disease will begin to progress again.

[Darth Executor]

It's no myth - and you're credulity is showing.

It's not exactly a secret. Yoshi is hands down the most gullible person I know, real life or Internet. :teeth: