September 1, 2010

September 1, 2010
How Did We Get Here?

Welcome to another day in my life. Today is Wednesday and we have made it to the middle of another work week. I hope you are having a safe and great weekend so far!

It is the start of another busy week for Dab the AIDS Bear as we do events around the world helping other organizations raise money to take care of people with HIV and AIDS.

But the question is how did we get here? How did we get to the horrible place where people with HIV and AIDS have to worry about how they are going to get care? When did hope leave the discussion of living with HIV and AIDS?

Using estimates of HIV infection over the last 10 years (2000-2009 extrapolated from Centers for Disease Control and Prevention (CDC) reports that America had an estimated 383,000* more people living with HIV (HIV incidence minus the AIDS deaths). During this same time, the Kaiser Family Foundation says that funding for the Ryan White Care Act continues to increase; but at a slower rate, with most increases targeted to AIDS Drug Assistance Programs (ADAPs). It is not reasonable to assume that you can provide the same level of care and medications when an estimated 380,000 additional Americans are living with HIV during a 10 year period that saw limited increases in Ryan White funding except for ADAP.

When you add an economic downturn that forced more people onto ADAP, significant increases in HIV testing to identify more HIV positive Americans, and cutbacks in state funding, you get what the National Alliance of State and Territorial AIDS Directors calls the perfect storm.

We may not want to admit it; but the system is broken. Yet like Sisyphus, we continue to push that rock up a hill. We do it because that is what community is supposed to do. We do it because failure is not an option. We do it in memory of all those we have lost.

In the business world, if you do not have the money, you do not provide the service. In our movement, we will struggle and fight to do the best that we can, regardless of money or resources.

Reduce the Number of New Infections

If we are going to control these escalating costs, we have to reduce the number of new HIV infections. On our current path, by 2015 the estimates could top 74,000 new infections per year.

In 2001, the CDC said they could reduce the number of new infections by 50% over the next 5 years if given enough resources. The reality is that HIV incidence stayed stable around an estimated 56,300 new cases per year. However, we were able to reduce HIV transmission rates from 6.2 in 2000 to 5.0 in 2006 (latest numbers). This represents some progress because more people living with HIV should have resulted in more HIV infections and that did not happen. However, we did not reach the target of 50% reduction. At the time, the CDC said they did not have the resources necessary to reduce the number of new infections. What is different this time? Can we achieve a 25% reduction in new infections with no new funding?

Over the next few months, the CDC will finalize their implementation plan for the National HIV/AIDS Strategy (NHAS). We all have to take responsibility and hold each other accountable, not just for the process, but also the outcomes. At the end of the day, it has to be about a reduction in new infections.

At stake is our nation’s commitment to HIV prevention. Can we continue to ask Congress to fund programs that cannot document a decrease in HIV incidence and HIV transmission? I know what I am saying is heresy; but we have to stop this virus. If we fail, I recommend that you buy pharmaceutical stocks; because we are going to have lots of people who will need lots of medications.

However, if we are able to reduce new HIV infections by 25% over the next 5 years, we could save an estimated $17.981 billion due to reductions in the need for care and/or medications. These savings could more then cover the costs associated with the implementation of the NHAS.

The Cost of NHAS

All of this planning is moot without additional funding. According to Dr. David Holtgrave, it is going to take an estimated $15.175 billion over 5 years to fully implement the NHAS. However, these costs will be offset by the saving derived from the 25% reduction in new HIV infections.

So how do you get $15 billion out of Congress at a time when the government is broke? People point to the banking industry or the automobile industry to illustrate Congress’ ability to find a trillion dollars to finance these companies at the start of our 2008 recession. The argument being, if they did it for them, they can do it for us.

This may be true, but my experience says that Congress seldom moves without significant pressure from constituents. The reality is that the HIV/AIDS community does not have the political clout of the banking or automobile industries. In fact, we hear from many members of Congress “What ADAP Crisis?” They have not heard about the crisis from their constituents, so in their mind, HIV/AIDS is getting more than enough money.


We need to build constituent pressure in key congressional districts. Without significant grassroots involvement, it is difficult to see how we will get the $15 billion necessary to implement the NHAS. While it is important to have some of the resources redirected from existing budgets and we need the private sector to play a vital role, it is hard to imagine that redirection and private section investment alone will come up with the needed resources. Without new money, it is difficult to see how we can reduce the number of new infections and provide the care and medications critical to all people living with HIV/AIDS.

If we do not make this investment, America is choosing to have more HIV infection, more untreated HIV illness, and actually spending more money in the long run. Does it make sense to spend more money in the long run and have worse health outcomes?

There are many existing grassroots networks, please join one of them. If you do not have one in your city and/or state, it is time to create one. If you have one, but it is not effective, then it’s time to fix it or get a new one. Let us talk at this year’s United States Conference on AIDS (USCA). I realize we are not a one size fits all kind of movement; hopefully, we can come up with a variety of solutions to address these challenges.

In many ways, the NHAS may be our last great hope. Its success will change the course of the epidemic; its failure may condemn us to a future of hospitals, doctors and medications.

I am not a researcher, so this was Paul Kawata math. I multiplied 56,300 new HIV infections each year for a 10 year total of 563,000. I then subtracted an average of 18,000 AIDS deaths per year to estimate 383,000 more people living with HIV over this 10 year period. This is just a rough estimate from a guy who does not have a PhD. There are certainly more precise ways to figure out how many more people are living HIV; but I think this is a defendable rough estimate.

I want to thank Dr. David Holtgrave. Most of the data for my musings came from his editorial in the Journal of Acquired Immune Deficiency Syndromes. Once again, I am not a researcher and I may have misinterpreted his data. The challenge for “community” is how to make the science of HIV understandable to the regular Joes. I am definitely a regular Joe when it comes to science.

Now you know the rest of the story of how we got where we are today with helping people with HIV and AIDS in the United State.

Until we meet again; here's wishing you health, hope, happiness and just enough.

big bear hug,

Daddy Dab