ADAP vs. PEPFAR: Backwards Bush League Priorities and Basic Science

[CorpGovActivist]

A good friend of mine who works as a medical researcher for both the FDA and the NIH has told me some pretty horrifying stories about how the current Administration has gutted basic science.

Where reproductive health is concerned, the ideological intrustion into basic science is especially alarming.

This friend works primarily with infectious diseases, including those that are spread through sex. Recently, he brought this NY Times article to my attention: http://query.nytimes.com/gst/fullpage.html?sec=health&res=9C07E7D91F31F93AA15751C1A9609C8B63

"But I thought we have this huge global fund to pay for those meds?!?" I exclaimed.

"Oh, you mean PEPFAR," he said, his voice dripping with derisive sarcasm. "That was the Administration's way to prop up big pharma, which was facing off-patent generics from places like India and South America. Here in the U.S., each state administers a Federal program called ADAP. Several states struggle to keep from having a waiting list."

Sure enough, I did some research, and discovered that my native state had only just recently eliminated its latest backlog: http://kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=42099

Waiting list policies in several states signal a nervous worry that they will either need to create (or, in some cases, reinstitute) a waiting list: http://www.google.com/search?hl=en&lr=&q=adap+%22waiting+list%22

PEPFAR = President's Emergency Plan For AIDS Relief (foreign)

ADAP = AIDS Drug Assistance Programs (domestic)

The more I looked into this, the more outraged I got. When a 24-year-old college student in South Carolina has to drop out of school, and practically beg for life-saving meds, something is seriously wrong with the priorities: http://www.poz.com/articles/401_11096.shtml

My friend asked me who in the new Congress he might contact, in order to share firsthand knowledge about the Bush political appointees' interference with grants, basic science, and life-saving information.

I shouldn't have been surprised: http://oversight.house.gov/investigations.asp?Issue=HIV/AIDS

: )

As we continued to discuss this issue, my friend came up with a very simple, very elegant idea for fully funding ADAP programs in all 50 states: attach a funding rider to the "President's Emergency Plan for AIDS Relief" (foreign) that requires any funding shortfall in state ADAP programs to be funded out of PEPFAR funds, before any of those funds can be spent overseas.

Of course, we both agreed that absent the tax cuts and the war of choice in Iraq, these budget decisions would be easier, but I like his stopgap solution in the interim.

- Dave

[porphyrian]

1. I'll kick that. - n/t

[radfringe]

2. old article, but it has sources

Scientists: Bush Distorts Science
By Kristen Philipkoski
13:33 PM Feb, 18, 2004
http://www.wired.com/news/medtech/0,1286,62339,00.html

The Bush administration has distorted scientific fact leading to policy decisions on the environment, health, biomedical research and nuclear weaponry, a group of about 60 scientists, including 20 Nobel laureates, said in a statement on Wednesday.

The Union of Concerned Scientists, an independent organization, also issued a 37-page report, "Scientific Integrity in Policymaking," detailing the accusations. The statement and the report both accuse the Bush administration of distorting and suppressing findings that contradict administration policies, stacking panels with like-minded and underqualified scientists with ties to industry, and eliminating some advisory committees altogether.

---------

http://www.ucsusa.org/scientific_integrity/interference/a-to-z-guide-to-political.html

The A to Z Guide to Political Interference in Science

--------------------------------------------------------------------------------
In recent years, scientists who work for and advise the federal government have seen their work manipulated, suppressed, distorted, while agencies have systematically limited public and policy maker access to critical scientific information. To document this abuse, the Union of Concerned Scientists has created the A to Z Guide to Political Interference in Science.

[CorpGovActivist]

4. Spillover from HIV Research: The "Tang Effect"

We all have heard the old chestnut about all the spillover tech we've gotten from NASA ... call it "The Tang Effect," and chalk one up to NASA proponents for putting those side benefits into perspective for a wider American audience.

I shared with my researcher friend that the NIH/FDA/CDC and other similar public health agencies have got to do a better job of explaining to the American public what the spillover benefits of basic HIV research have been.

Within the last month: http://www.google.com/search?hl=en&q=princeton+hiv+latent

That research has the potential to eradicate (or provide new treatment options for) many other deadly viral infections. It also has the potential to provide new targets for treating aggressive cancers.

The challenges are similar: grumbling about "wasting" money on space exploration has been effectively counteracted with Velcro, Tang, and satellite TV; grumbling about "wasting" money on basic scientific research for a "morally-tainted" disease could be effectively counteracted with a laundry list of the spillover treatments/techniques that have already emerged from that science for "blameless" conditions like cancer.

To the OP's point, though: I think there may be a small group of Government medical researchers who are about to turn whistleblowers, too. In a very real way, there have been domestic casualties of the Iraq war - measured in lives lost to the deliberate interference with (and underfunding of) basic medical research.

- Dave

[nealmhughes]

3. The ADAP monies is only partially funded by the feds, the states are expected

to pick up the rest. Some give it a half-hearted attempt, others do a great job, and the rest of the states are not only stingy, but downright evil when it comes to doling out the tab.
Politics right now are affecting this. Sen. Clinton among others whose states were originally the frontlines of the HIV epidemic still get funding based on their formulae for that fought tooth and nail and even held up funding for the South in the Senate. In reality, HIV is an infection that is rapidly becoming a Southern and African-American infection.

4 have died on SC's 300+ waiting list, propped up by the drug companies' largesse in monthly allotments after tremendous paperwork and recerts . . . Sen. Clinton did not fight for "full funding," rather for the preservation of the status quo, that is to preserve NYC's funding along with SF's, Miami's and various other lucky places. She even went so far as to say that people were moving to NY for their HIV meds, placing a burden on that state.

I'm not singling out Sen. Clinton for ineptude, but the entire Senate. She just serves as an example for the provincial attitude towards a nationwide/worldwide crisis. It would be much cheaper on everyone were the government to merely grant Medicare to every HIV infected person, thus relieving them of the "burden" perceived by actual or potential employers. I don't care what the ADA says, tell the truth on your cover letter that accompanies your cv on why you haven't been working for the past two years and you go to the bottom of the barrel. Sans helper monkey or walking cane, ADA is a joke when it comes to PLWHIV/AIDS.

I speak with the voice of personal experience here. SSDI is automaticically denied by administrative law judges who do not understand how HIV/AIDS waxes and wanes in its severity and the side effects of our live-preserving drugs. The appeals process is long, arduous and lawyers rapidly lose interest, since these cases are taken on contingency, and require a great deal of paper shuffling as well as technical skill in the court room.

Our Congress must simply do what is cheaper, just and right for me and my brothers and sisters who live daily under the stigma of HIV. What do I want? A job for which I am qualified, health insurance, money left over from drug and physicians' bills to repay my student loans, my rent and utilities...the same as everyone else. Instead, I live on the largesse of my family and am medicated via ADAP, me, a fucking veteran, holder of two master's degrees and never even thought of slacking or begrudging my taxes, who has paid into SS from 79 to 05, oh, well, so much for insurance...so much for anything except a life of beggary for us, and it is the Congress and the Administration to blame.

That is why I am political now, by the way...

Rant over.

[kineneb]

5. I so understand

hang in there. :hug:

We had to go broke ("asset spend down") to be able to get health care for Hubby before he got on disability. Renal failure is slow and insidious, leaving the patient exhausted. But being so tired you can't work is not a "disability." One has to go into full kidney failure before the government will help. Never mind private insurance, which we lost due to the ineptitude and greed of Bernie Ebbers (WorldCom).

We both worked and paid our taxes. I have a BA and almost an MA ("ABT"). And because of illness, we now live at near poverty level.

America: only for the healthy and wealthy...screw the rest.


So little has changed, it seems. Brings to mind an old song:


"Brother, Can You Spare a Dime," lyrics by Yip Harburg, music by Jay Gorney (1931)


They used to tell me I was building a dream, and so I followed the mob,
When there was earth to plow, or guns to bear, I was always there right on the job.
They used to tell me I was building a dream, with peace and glory ahead,
Why should I be standing in line, just waiting for bread?

Once I built a railroad, I made it run, made it race against time.
Once I built a railroad; now it's done. Brother, can you spare a dime?
Once I built a tower, up to the sun, brick, and rivet, and lime;
Once I built a tower, now it's done. Brother, can you spare a dime?

Once in khaki suits, gee we looked swell,
Full of that Yankee Doodly Dum,
Half a million boots went slogging through Hell,
And I was the kid with the drum!

Say, don't you remember, they called me Al; it was Al all the time.
Why don't you remember, I'm your pal? Buddy, can you spare a dime?

Once in khaki suits, gee we looked swell,
Full of that Yankee Doodly Dum,
Half a million boots went slogging through Hell,
And I was the kid with the drum!

Say, don't you remember, they called me Al; it was Al all the time.
Say, don't you remember, I'm your pal? Buddy, can you spare a dime?

[CorpGovActivist]

7. Thank you...

... for sharing your personal experience and firsthand knowledge.

Who can we at DU contact to move the ball down the field in the right direction? What public policy initiatives can we support that would make life easier?

- Dave

P.S. My dad lost his SSDI under Reagan I, and had to fight tooth, nail, and claw to get it back; he was permanently disabled in the coal mines. I can empathize with the red tape entailed, and the stress it places on an entire family.

[nealmhughes]

8. Thanks to all for your concern.

I doubt there is anything any group can do for us lot, save the Congress, who are able to pass a Medicare Bill for people with catastrophic diseases and injuries, and that is where citizens come in: we must demand this to extend to all of those with renal disease, HIV, cancer, black lung, etc. as it bankrupts a family once the insurance runs out, and I could no longer afford COBRA for my BCBS once I left work (or should I say driven from work for my "laziness" and "confusion", unbeknownst to me, there was a reason I could not stay awake and concentrate and would cry at the drop of a pin or else lash out at anyone for no reason: brain lesions).

Congress must pass Medicare for all we citizens who have paid into this fund for years and years and years and probably won't live to be 65 or whatever age it is to get the old folks' benefit. Another thing Congress needs to do is to go beyond lip service and to proactive recruitment to people with disabilities that are not visually signified.
For all of those who actually believe such bullswallop as "academia takes care of its own" and "academics are crazy leftists" that is the biggest lie ever perpetrated upon the face of the earth. Academia is the most conservative place on the earth, when money is involved... it had might as well be the Grover Norquist Ayn Rand Reading Circle when push comes to shove.

Meanwhile I sit on my mountain, and love my dogs and my few remaining friends and family and agitate, agitate, agitate, curse, pull no punches and live off of my mother's most grateful charity, along with Uncle Lyndon's food rations, do "pretend" editing jobs for those who feel sorry for me, and count on Alabama to still manage to throw me the portion of the $800 a month my 3 pills a day cost to keep me alive and sane.

To paraphrase Sally Bowles in Cabaret, "I've got the tiniest whiff of HIV..." and once I devoted myself to two years of therapy, antidepressants and relearned to do small things like unlock doors, make notes to myself to mask the short term memory loss and regain the 40 lbs I had lost, am in the best shape of my life! At least I do have my health...

[CorpGovActivist]

10. My Friend at the FDA/NIH Recommended You Look at...

http://www.thebody.com/

He especially recommended this forum for workplace/insurance issues: http://www.thebody.com/Forums/AIDS/Workplace/index.html

For what it's worth, I hope that helps.

- Dave

[Blackhatjack]

6. Falls in same category as unfunded state mandates.....

.... with loss of revenue sharing, putting the funding onus on states is the same think as killing many programs since there is no way a state struggling financially can foot the bill for the mandate thrust upon it.

Just another weapon in the arsenal ideologues use to impose their will on the powerless.

[DemReadingDU]

9. Sen Dorgan doesn't like Big Pharma

I am currently reading Sen Byron Dorgan's book,
Take This Job and Ship It: How Corporate Greed and Brain-Dead Politics Are Selling Out America

http://www.amazon.com/Take-This-Job-Ship-Brain-Dead/dp/031235522X/sr=8-1/qid=1168903020/ref=pd_bbs_sr_1/102-8825233-6536149?ie=UTF8&s=books



He discusses Big Pharma in chapter 5. Americans are getting ripped off, big time. It's disgusting the amount we pay for drugs. Take Zocor. The same FDA-approved bottle of Zocor pills sells for $3.03 per tablet in U.S., but only $1.12 per tablet in Canada.

This is the same pill, in the same bottle.

More examples in his book, as well as information about other corporate greed and corruption.

[DemReadingDU]

11. morning kick

:hi: