As the Patient Protection and Affordable Care Act (ACA) continues the trek down the long tortuous hallway to become implemented law, a misquoted line, from Hunter S. Thompson, comes to mind. (I am using one of the misquotes)

“Hollywood, a long tortured hallway where thieves and pimps run free and good men die like dogs, for no good reason. There is also a bad side” – mis-quote of Hunter Thompson

We have all become complacent as to the unintended consequence of government deeds.  In researching my book, “The History and Evolution of Health Care in America: The Untold Backstory of Where We’ve Been, Where We Are, And Why Health Care Needs More Reform,” In a small way, I have become some kind of dubious expert on the historical record of the unintended consequences of the actions taken by our government, and many others, related to healthcare in America.  For some time now, I have been concerned that there may be very significant unintended consequences of the Affordable Care Act, particularly relating to special disease state programs offered by both states, and the federal government like; HIV/AIDS, hepatitis, heart disease, COPD, diabetes, etc.

ADAP as an Example

(While mandated rebates sounds like a great thing for consumers – it is not.  Federally mandated rebates are one of the drivers increasing the cost of medications to all of us and a major cause of the lack of transparency in drug pricing. I discuss this extensively in my upcoming book.)

An example of the kind of program I am referring to in California, would be the AIDS Drug Assistance Program (ADAP).  The California AIDS Drugs Assistance Program is a prescription drug coverage program funded, in part, by Title II of the Ryan White CARE Act created in 1990 by the US Congress and reauthorized in 1996, 2000, 2006 and 2009.
The ADAP program, provides medication purchase assistance to people suffering with AIDS, based on specific eligibility criteria.  The program sets limits on income, viral load, CD4 count, etc.  Depending on the criteria, eligible participants receive assistance ranging from; payment of insurance co-pay – up to and including full coverage of the medications proscribed, as long as the drugs are covered under the state’s extensive ADAP medication formulary (the approved list of medications).
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 a HIV/AIDS diagnosis (Requires Physician’s Letter and recent CD4 Count and Viral Load)
• 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.

ADAP is not all that California provides under the Ryan White Care Act to Californians suffering from AIDS, but it makes up the largest of the Office of AIDS’ (OA) expenditures – roughly $434 million of $1.3 trillion in total budget.  Of the $434 million number about 30%, approximately $126 million, comes from the California State General Fund, approximately 23%, $100 million, comes from the Ryan White Care Act funds, and 48%, $210 million, comes from mandated rebates from drug manufacturers

The Ryan White Care Act ¹

The Ryan White Care Act is the United States largest federally funded program for people living with HIV/AIDS. The act sought funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.
Unlike Medicare or Medicaid, Ryan White programs are “payer of last resort”, which fund treatment when no other resources are available. As AIDS has spread, the funding of the program has increased. In 1991, the first year funds were appropriated, around US$220 million were spent; by the early 2000s, this number had almost increased 10-fold. The Ryan White Care Act was reauthorized in 1996, 2000 and 2006. The program provides some level of care for around 500,000 people a year and, in 2004, provided funds to 2,567 organizations. The Ryan White programs also fund local and State primary medical care providers, support services, healthcare provider training programs, and provide technical assistance to such organizations.
In fiscal year 2005, federal funding for the Ryan White Care Act was $2.1 billion. As of 2005, roughly one-third of this money went to the AIDS Drug Assistance Programs (ADAP) which provides drugs for 30 percent of HIV-infected patients. The primary activity of ADAP is providing FDA approved prescription medication.

 So,  why should we be concerned?

One of the major reasons for the enactment of The Ryan White Care Act, and the subsequent creation of ADAP programs in the first place, was the inability of those with this tragic disease to get adequate coverage from their insurers.  A diagnosis of HIV/AIDS became a red flag to insurers that either precluded coverage, if it was a pre-existing condition, or HIV/AIDS patients found their policies dropped for a myriad of other reasons mostly due to lifetime limits and trumped-up problems.  As a result, people with a diagnosis of HIV/AIDS could not get insurance.  The Ryan White Care Act and the various ADAP programs offered under this federal program through the 58 states and territories have done a wonderful job of helping treat, help to arrest the spread, and improve the quality of life of those with this horrible disease.  I think, this is undisputed.  The Ryan White Care Act and ADAP have been unqualified successes.  One of those rare occurrences within governmental programs.

President Obama’s 2012 HIV/AIDS budget requests $21.4 billion in funding for  Domestic HIV/AIDS activities. – Kaiser Family Foundation Report on HIV/AIDS Policy 

Having spent a good deal of time, for the past few years, in Washington, DC traveling the same long tortured hallway Hunter was claimed to have spoken about, I have developed a pretty good understanding of what is making things work there now-a-days.  The main issue on everyone’s lips, not just Republicans, is reducing spending.  The last re-authorization of Ryan White, in 2009, was a heated, and anger riddled, argument.  There were those then (including many leading democrats like Senator Kennedy) that did not want to reauthorize the existing legislation.  They were advocating creating new legislation that better dealt with the realities of the disease as it stood today.  But like most entitlements, the constituents, and their very vocal advocates, did not trust the government to bring them the program that they wanted.  While, they all agreed that the Ryan White Care Act was not great, they felt it was better than what they might get.  In the end, the political pressure drove the legislation to be reauthorized and extended four more years.  Determined to not see this, in their view, unwieldy and ineffective Act reauthorized one more time, Kennedy’s staff made sure that the 2009 re-authorization legislative language included a sunset provision that prohibited another re-authorization down the road.

 Well Things Have Changed – Haven’t They?

The biggest problem with AIDS today is that people no longer feel guilty nor afraid of the disease!
– Britt Weinstock, Senior Health Policy Advisor – Congressional Black Caucus

Well they have and have not.  Illustrated in the statement made by Britt Weinstock (one of the brightest and dedicated individuals I have met in Washington DC) in a meeting with me in 2007, the overall nature of the nations focus and funding for HIV/AIDS had changed.  It was then getting increasingly difficult to get attention in congress and squeeze out the necessary funding.  When the Ryan White Care Act was originally conceived the nature and treatment of HIV/AIDS was that of a terminal illness on the rise to a national epidemic.  Today it can be a treatable, if chronic, condition.  Then people diagnosed with AIDS had an expected lifetime of a few months to 8 years.  Today, with treatment, they can live mostly full and productive lives.  Like most other chronic diseases we face today, as the prognosis for HIV/AIDS has improved the lifetime cost of treatment has increased many fold.
As far as the Affordable Care Act goes, if this legislation continues to be enacted, it will prohibit insurers from barring HIV/AIDS patients from getting insurance to cover their needs – a seemingly good thing.  In fact, many states have already set up special funds for patients with pre-existing conditions and temporary high-risk insurance pools as an interim solution till the ACA takes full effect.  In the May revision of California Governor Brown’s 2011-12 Budget, the Office of AIDS are projecting saving some money by changing ADAP eligibility so that some of the covered patients shift into the states Pre-Existing Condition Insurance Plan (PCIP).  This program is a federally funded program and does not, at this point, receive any funding from the California State General Fund.  With cuts to Medicare, Medicaid, and Social Security now in open discussion, will such programs be deemed as necessary?  With Ms. Weinstock’s statement in mind will American citizens agree with the priority of additional funding?
As a result of the historical empathy and generosity of Californians, HIV/AIDS patients in California currently receive some of the best program benefits in the US today, and as a result, the public health crisis from HIV/AIDS has been contained and almost all patients in California have access to quality care and the required medications.  The question is – for how long?
As was seen in the 2009 re-authorization of Ryan White, many politicians did not want to be on the wrong side of the HIV/AIDS or GLBT activist communities and as such even the lion of the senate yielded and agreed to their demands for re-authorization.  But the game has definitely changed!  Before the choice for politicians was either, I agree to fund these programs or, since there was no insurance or other option for HIV/AIDS patients – they would die.
Today, the question politicians have to answer from the general public is; “Why do we need these types of programs? We just passed ObamaCare and everyone now gets insurance, or subsidies to buy insurance!”  The question for HIV/AIDS and other special disease state patients is, will politicians, having many fiscal-crisis related issues now the focus before them – without the ability to just print money to pay for them as we have in the past – have the strength to stand up to the rest of the fiscally troubled middle-class and say…

“Well you see…  Ahhh…  Well…  the Affordable Care Act…  aaaa, really didn’t cover everyone they way we thought…  And you see…”

Or will they just not re-authorize Ryan White and other special disease state programs like it and push it all off to MediCare, Medicaid and the ACA or the states.
How long can politicians in Washington, DC and Sacramento, continue to fund these needed programs?  How long will the politicians have the courage to stand up and continue in light of the looming fiscal crisis and its impact on seniors, disabled, children and under-served middle class and lower class Americans?  The question to the politicians really will be,

“Why do we need these programs if we just passed ObamaCare and spent trillions on it?”

“Politicians could use the answer, “Well….  Ahhh…  You see – aaaaa…..  Well it’s like this, you see, the Affordable Care Act really didn’t protect everyone!”  Some politicians may see it as a safer action – a more re-electable action – to not reauthorize these programs because; unlike before, when the choice was either we authorize these programs or people die because they can’t get insurance; now, to the vast majority of Americans, it seems no longer necessary because we just spent trillions to ensure that everyone has health care –  didn’t we?  Can a politician stand there and tell Mr. and Mrs. Middle Class America that the health needs for this increasing but still minority population of Americans is greater than their own fiscal needs?  And more importantly will these middle class Americans have the willingness to accept it.  Do we truly think, that we can fund everything we want by just taxing the richest 1%, 5%, or 10% of Americans?  If you look at the numbers, despite the rhetoric, we probably can’t.
This is a tough one!  Regardless of how anyone feels about the ACA – and almost no one actually likes it on either side – just like most other government programs, it is designed for somewhat near the lower-middle of the bell curve.  The people on the extreme edges of the bell curve get either poor or no benefit from these programs.  This is a fiscal reality.  The cost of the benefits for the people in the covered range of the bell curve where the programs are offered, has to be born by all the rest of the population.  The fringes never really get completely covered, even though the center of the bell is not in the middle-point of these curves.  So, we will always likely need specialty programs if we are going to commit to have the government take care of the most fragile among us!
It remains to be seen if this will be the case.  As I said, I am very concerned at this point that the Givernment of the People, By the People, and For the People is still able to do this, unless we rethink what this commitment means and more importantly, how to accomplish it.  We need to fundamentally restructure healthcare and rework, from scratch, the supply chain.  Perhaps we need to look not just at the government, but beyond government as well, to our individual relationships with, and responsibilities to, each other if we hope to find some answers.
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