How Did We Get Here?

Lack of funding has always been a problem, so why does it feel like such an acute issue right now? From my perspective, our systems of care have reached their tipping point.

Using estimates of HIV infection over the last 10 years (2000-2009), I 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 Program (ADAP).”

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 the 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 suppose 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 don’t have the money, you don’t 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, 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 to 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’ve not heard about the crisis from their constituents, so in their mind, HIV/AIDS is getting more than enough money.

Solutions
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 an vital role, its 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 don’t 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 don’t have one in your city and/or state, its time to create one. If you have one, but its not effective, then its time to fix it or get a new one. Let’s 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 infection 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 (http://tinyurl.com/35yr7zp). 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.

Why The Prop 8 Decision Should Be Important To The HIV/AIDS Community

When Dr. Julie Gerberdine was the head of the Centers for Disease Control and Prevention (CDC), she had a big HIV/AIDS summit. We were all very excited, here was a doctor who took care of People with AIDS (PWA), from San Francisco no less, who was bringing us all together to discuss the future of HIV/AIDS prevention. Later we would find out that Concerned Women for America, Traditional Values Coalition and other similar organizations would also be invited.

During the first group session, Peter, the man from Concerned Women For American (oh the irony) told me “I think you are sick and demented, but you probably think I am sick and demented, so I guess we’re even.” Being the good Asian that I am, I wasn’t mad or angry, I was humiliated. I was mortified that this stranger could call me demented. Immediately, I became that little boy who could not catch a ball, that little boy who loved his Barbie.

Those words took me back to a time when I was scared and desperately wanted to fit in. For many gay men, this is the message we get from the world. Its not about our skills or intelligence, its about who we are and who we love. Its not just gay men, people of color, women, trans community all get similar messages. When they talk about the stigma of HIV/AIDS, its more then just the stigma attached to the disease, it is also the stigma attached to the people who get the disease.

What I appreciate about the National HIV/AIDS Strategy is its commitment to address this stigma. From my perspective, there is great value in teaching little boys who like to play with dolls that they are OK just the way they are. If we can send messages to women that they deserve equal pay for equal work. If we show people of color that America is truly a color blind country, then we won’t just have fought a disease, we will have changed the world.

That’s why the Prop 8 decision is so important to the HIV/AIDS community, it tells that little boy who couldn’t catch a ball that his relationships are equal to heterosexual relationships. Not better then, but equal. Maybe if we believe that we are equal, we will believe that our lives have value. When your life has value, you are more likely to use a condom. When you are worth something, you are more likely to take your medications. If we want to stop HIV, we have to stop the stigma attached to this disease.

Dr. Gerberdine’s summit ended with Concerned Women For America and the Traditional Values Coalition making a recommendation that the CDC take all the money being used to prevent HIV/AIDS within the gay community and reprogram those funds to pay for reparative therapy for gay men.

They wonder why we hate ourselves... maybe its because the world tells us we are not good enough, that we don’t deserve equal relationships, that we don’t deserve love.

If the AIDS epidemic has taught me anything, its taught me to love and cherish my friends who are my family. Please know you are all my family.

USCA: Special Scholarships, ADAP Track & ADAP Plenary

Applications Due Aug 16th

This year at the United States Conference on AIDS (USCA/ http://www.2010usca.org ) we will focus on two main policy issues:

• AIDS Drug Assistance Program (ADAP)
• National HIV/AIDS Strategy (NHAS)

If we are going to be the movement necessary to address the challenges of HIV/AIDS, we must organize at the city, state and federal levels. At this years USCA, we want to continue this important dialogue.

We will offer an additional 50 Part B Scholarships. Applications due Aug 16th

• 40 for HIV Positive Individuals

1. Priority #1 Consumers on ADAP Waiting Lists
2. Priority #2 Consumers Removed From ADAP Due To Changes In Income Eligibility
3. Priority #3 Consumers on ADAP
4. Priority #4 HIV Positive Individuals

• 10 for State ADAP Directors

This scholarship (B) will give the recipients

• One USCA Registration
• $100 Travel Voucher
• Two Night Hotel @ Official Conference Hotel

Application

We want to make the application as simple as possible. The first scholarships are only for HIV Positive Individuals. For priorities #1 or #2, please forward a copy of the letter that documents you are on a waiting list or that you were removed from ADAP. If you are a consumer on ADAP or HIV Positive, we need a letter from your local community based organization (CBO) verifying you are a client. Be sure to include your name, address, phone number and email address. Send information to info@nmac.org or fax it to 202-483-1135. Due August 16th

These scholarships applications will be reviewed with the following priorities

1. Consumers on ADAP Waiting Lists
2. Consumers who were removed from ADAP due to changes in income eligibility
3. PWAs Who Do ADAP Advocacy
4. Regional Diversity (we will give priority to people from 13 states that have waiting lists or the 4 states that have lowered income eligibility as of Aug 6th per National Alliance of State and Territorial AIDS Directors [NASTAD])
5. PWAs that get additional support to attend the meeting from their local CBO
6. Limit One PWA Scholarship Per Agency

For state ADAP directors, just send us an email (info@nmac.org) with all your contact information, we will confirm with NASTAD. This scholarships will be on a first come, first serve basis. Due August 16th

While At USCA

While at USCA you are free to attend any session that peaks your interest. If you are willing, we would like you to participate in workshop #1 The Stories Behind The Numbers—PWAs on ADAP Waiting Lists

ADAP Track @ USCA

Below are the workshops for the ADAP track at USCA. We want to thank NASTAD, AIDS Foundation of Chicago and Project Inform for their sessions. We also want to thank the 13 national executive directors who are coming together to do an unprecedented workshop together. This is not the order the workshops will happen, that is still being determined.

1) The Stories Behind The Numbers—PWAs On ADAP Waiting List

This session will tell the stories behind the numbers. We will hear directly from PWAs on ADAP waiting lists, what it means to wait. What it means to not know where you will get your medications. We want to work with community based organizations to help them tell the stories of their clients on waiting lists. To give a human face to the numbers. The session will both tell the stories and train organizers on how to use video to tell the stories of their clients

2) Securing a Bridge for ADAPs through 2014 – ADAP Advocacy

Ann Lefert, National Alliance of State and Territorial AIDS Directors

Ryan Clary, Project Inform

This session will discuss the current ADAP crisis and the need for efforts to increase resources for the program through the implementation of health reform in 2014. A grassroots organization, Save America’s ADAPs, will highlight their advocacy efforts and ways to become more involved in federal and state-level advocacy. State-based successes will also be highlighted.

3) ADAP Cost Containment Measures – How do states how to limit costs?

Murray Penner, National Alliance of State and Territorial AIDS Directors

Ann Lefert, National Alliance of State and Territorial AIDS Directors

State Health Departments are faced by many decisions when looking to manage costs in their ADAPs. This session will provide a detailed overview of different cost-containment measures that ADAPs have used to manage their ADAP funds and how the decisions to implement restrictions were made. The session will also highlight the opportunities in working with your state health department on ADAP management and advocacy.

4) National EDs What You Can Expect From Your National Organizations

• Gulliermo Chacon (Latino Commission on AIDS/LCA)
• Allan Clear (Harm Reduction Coalition/HRC)
• Julie Davids (Community HIV/AIDS Mobilization Project/CHAMP)
• Kandy Ferree (National AIDS Fund/NAF)
• C. Virginia Fields (National Black Leadership Commission on AIDS/NBLCA)
• Anna Ford (Urban Coalition on HIV/AIDS Prevention Services/UCHAPS)
• Paul Kawata (National Minority AIDS Council/NMAC)
• Frank Oldham (National Association of People with AIDS/NAPWA)
• Julie Rhoad (Names Project)
• Michael Ruppal (AIDS Institute)
• William Smith (National Coalition of STD Directors/NCSD)
• Carole Treston (AIDS Alliance)
• Dana Van Gorder (Project Inform/PI)

This is your opportunity to meet and talk with the Executive Directors of National HIV/AIDS Organizations. To hear about their advocacy agendas and the services they can offer your agency. This is not focused just on ADAP, it will cover all the issues that are priorities to these organizations.

5) Building State and Local Advocacy Coalitions

David Munar, AIDS Foundation of Chicago

For us to be an effective national movement, we need to build state and local advocacy coalitions. This session will examine successful models in Chicago and Illinois as a template for you to build your own coalition. We will look at practical steps you need to take to set-up our own network.

6) Who Is Welvista and How Are They Helping PWAs on Waiting Lists?

TBA

Welvista is a nonprofit organization that fills prescriptions for patients who are uninsured and underinsured— with the HIV/AIDS medications that will help patients maintain their independence. Enrollment in the program is virtually automatic for anyone currently certified on an ADAP waiting list and the program will provide direct access to no-cost HIV medications. Welvista will be working with states across the nation to become their pharmacy connection in providing these patients with the HIV medications. It is their hope that other private sector partners will join us to further expand the medication reach to even more patients.

ADAP Plenary

The ADAP plenary lunch will be on Tuesday, September 14th from 11:45 to 1:30 PM This plenary is being produced by the NASTAD. Please go to http://www.nmac.org/index/2010-usca-agenda to get the full agenda for this year’s meeting.

NHAS

The National HIV/AIDS Strategy is the other policy priority for this meeting. We are very excited to announce that Health and Human Services (HHS) is coordinating the closing plenary entitled The National HIV/AIDS Strategy: Taking Steps to Make it Real at the Community Level. This lunch plenary is scheduled for Wednesday, September 15th from 11:45 AM to 2:00 PM. The session will be led by Dr. Ronald Valdiserri, Deputy Assistant Secretary for Health, Infectious Diseases, at the U.S. Department of Health and Human Services, and Jeffrey Crowley, Director of the White House Office of National AIDS Policy. More details to follow shortly.

Notes About The Scholarship

Since the scholarships in the first priority are for HIV positive individuals, your HIV status will not be confidential. Applications will be reviewed by a team of internal and external members.

Scholarship Hotel

All scholarship recipients must make their own hotel reservations.

Hilton Orlando Bonnet Creek

14100 Bonnet Creek Resort Lane

Orlando, Florida 32821

Room Rate (single or double): $139.00

Waldorf Astoria Orlando

14200 Bonnet Creek Resort Lane

Orlando, Florida 32821

Room Rate (single or double): $199.00

Reservations for both hotels can be made by calling 1-800-HILTONS or via http://www.hilton.com.

Please note: Make sure to enter the Group/Convention Code “ZNMA” when making reservations online and mention the conference name - USCA - when making reservations via phone to access the conference rates.

$100 Travel Voucher

You can pick up your $100 travel voucher onsite at USCA. A booth will be set-up in the registration area to get your voucher. The booth will be open during regular registration hours.

P.S. I want to thank Michael Emanuel Rajner for this great idea!

So Beautiful

CDC Telebriefing
HIV Prevention Update and Discussion
Wed, Aug 4th
4:00 PM (Eastern)/1:00 PM (Pacific)

Please join the Centers For Disease Control and Prevention (CDC) for an important call about the National HIV/AIDS Strategy (NHAS) and an opportunity to redefine our nation’s approach to HIV prevention. As you will recall, the NHAS has set a goal of reducing new HIV infections by 25% within the next 5 years. I want to commend the White House, HHS and CDC for an ambitious goal. I particularly want to thank Dr. Jonathan Mermin, Janet Cleveland, Rich Wolitski and Rashad Burgess for having such an open process. It is a refreshing continuation of the NHAS process to be open and transparent with community (Please see CDC announcement below).

If you want to join the call, you need to send an email to DHAPCommunications@cdc.gov by COB Monday, August 2, 2010. You will receive a reply e-mail with the call-in numbers and links to resources that may help you prepare for the discussion. Registering for the call enables DHAP to have enough call lines available, and provides a mechanism for follow-up with participants, if necessary.

As you prepare for the call, think of the important questions or issues you would like to raise. The NHAS is calling for a shared responsibility to end this epidemic. It is time for all of us to do our parts. They are giving us an opportunity to have input. Don’t complain about the solutions, unless you participate in the process.

You must come prepared. Write your questions or issues down in advance of the call. Get to your point quickly because others also want to be heard. It is not enough to just listen, you represent a constituency that needs your voice at the table to tell the truth about their lives. They need to know the issues and challenges of serving Black Gay Men, Gay Men of Color, All Gay Men, Black Women, Latinas, Trans Community, Drug Using Community, Sex Workers, Incarcerated, or whoever your target population.

25% reduction is a very ambitious, but achievable goal. Its going to require all of us. What is the role of community based organizations (CBO)? What is the role of state or local health departments? What is the role of People Living with HIV?

How will we measure reductions in new HIV infections? Will it be estimates or actual case numbers? Will we have the same goal of 25% reduction across the country or will it vary by region or target populations? How will you be able to determine if your specific program is reducing the number of new infections?

Will we do outcome evaluations, as well as process evaluations? What is the expectation, capacity and financial commitment to CBOs to do outcome evaluations. How can we standardize the evaluation process so that we measure apple against apple?

Will there be specific numbered targets for reducing new HIV infections for CBOs, state or local health departments? What are the consequences of not reaching your target? Will there be the resources necessary to achieve that target? How much money is it going to cost to reduce new infections by 25%?

The NHAS document talked about moving resources from low incidence areas to high incidence areas. What is the plan to make this happen? What will be the impact on my CBOs or health department? Is there really enough money in these low incidence areas to have an impact of the reduction of new HIV cases? How much money are we talking about?

Will there be specific targets for the directly funded CBOs to reduce new HIV infections? How will their work be incorporated into the work of other CBOs and health departments? How will you know who is reducing new HIV infections, i.e. was it the directly funded CBO, another CBO, health department or research project. What is the role of structural interventions like Test and Treat, Prep or microbicides? How will we know which intervention is actually reducing the number of new infections?

These are real tough questions and we may not have all the answers. It is very difficult to prove a negative, i.e. to prove that someone did NOT get infected. This is not just the challenge for HIV, this is the challenge for all prevention programs.

Once again, I want to thank the CDC and Dr. Mermin for having such an open process. They are sending an important message to community and they deserve an equivalent response and commitment. I look forward to hearing the dialogue on Wednesday’s call. I am not going to talk on the call, the CDC hears enough from me, probably too much! It is up to you to carry the ball for your constituents, your agency and our movement. Your voice is critical, please make sure it is heard. Email (pkawata@nmac.org) me if you have any questions.

Yours in the struggle,

Paul Kawata
Executive Director
National Minority AIDS Council


Message From Centers For Disease Control and Prevention
WHO:
AIDS Directors, Surveillance Coordinators, Executive Directors of CBOs and National Organizations, researchers, practitioners, stakeholders, and others interested in HIV prevention

WHAT:
Tele-conference call update and discussion with Dr. Jonathan Mermin, Director of CDC’s Division of HIV/AIDS Prevention

WHY:
The National HIV/AIDS Strategy (NHAS), released this month by the White House, gives the HIV Prevention Community an opportunity to redefine our nation’s approach to HIV prevention and calls for shared responsibility to end this epidemic. This is a time characterized by optimism, great promise, and urgency. One of our many roles at CDC during this important time is to discuss progress, priorities, and emerging evidence. CDC will work hard to communicate routinely so that we can all maximize opportunities to advance HIV prevention and build upon momentum the NHAS has generated.

Discussion Points for this initial conference call include:

• HIV Prevention approaches in the National HIV/AIDS Strategy: What are the opportunities for our collective work?
• New research released during the International AIDS Conference
• New research published in JAIDS projecting possible courses of the US epidemic given multiple scenarios
  

WHEN:
Wednesday, August 4, 2010 from 4:00PM EDT until 5:00PM EDT

HOW:
RSVP to DHAPCommunications@cdc.gov by COB Monday, August 2, 2010. You will receive a reply e-mail with the call-in numbers and links to resources that may help you prepare for the discussion. Registering for the call enables DHAP to have enough call lines available, and provides a mechanism for follow-up with participants, if necessary.



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