Proven Champions & Emerging Leaders Fight to Protect ADAPs and End Waiting Lists

With the start of the U.S. Conference on AIDS (USCA) many activists, advocates, leaders and stakeholders will be ascending on Las Vegas, Nevada to map out strategies to combat HIV/AIDS in the United States.  Some of the people attending, or organizations being represented, are recipients of the ADAP Advocacy Association’s Annual ADAP Leadership Awards.  Their presence in Las Vegas will ensure that the AIDS Drug Assistance Programs (ADAPs) remain a central tenant of increasing and improving access to care for people living with HIV/AIDS.

The ADAP Advocacy Association held its 2nd Annual ADAP Leadership Awards dinner was held in Washington, D.C. in late August, which coincided with the organization’s 5th Annual Conference. Robert Suttle, Assistant Director of the SERO Project delivered an emotional keynote, calling attention to the need to reverse course on the expansion of HIV criminalization laws.  Suttle found out he had HIV-infection when he was trying to enlist in the Air Force.  When a contentious relationship ended, his former partner filed charges and he served six months in a Louisiana prison as part of a plea agreement.  Robert proclaimed in his rousing speech that he is NOT a criminal and he is NOT a sex offender.  To hear more about his story, click here.

The night featured compelling stories about the 2011-2012 awardees.  The acceptance speeches stirred a gamut of emotion from the audience, ranging from laughter to tears.  The evening shaped up to be a huge success because each speech invigorated the crowd.

Group photo of HIV-positive advocates after the dinner.

This year’s awardees were as follow:

ADAP Champion of the Year: Eddie Hamilton
Eddie Hamilton has been...and continues to be...a champion in the battle to preserve robust ADAP funding.  Most recently, Hamilton is at the forefront fighting the Ohio Department of Health’s (DOH) attempts to implement medical eligibility criteria in order to qualify for care and treatment under Ohio’s AIDS Drug Assistance Program.  Eddie Hamilton has 15 years’ experience working as an AIDS advocate in various regions of the country.  Now living in Columbus, Ohio, as of 2005, he is working with HIV-positive individuals at the grassroots level with the ADAP Educational Initiative to strengthen their advocacy voice, and effectiveness educating policy-makers about sound HIV/AIDS policy.  The legal victories against the Ohio DOH have served as a model for the rest of the country, and Hamilton's leadership during the struggle earned him the ADAP Champion of the Year award.  He challenges and encourages them that “complacency is no longer an option.”  In Hamilton’s speech, he spoke of a dear friend living in Georgia who did not have access to medication, and thus lost his battle against the disease.  Hamilton stated that his death is what continues to drive his advocacy efforts today.    If you live in Ohio and would like to get more involved in advocacy efforts in the Buckeye State, please email Eddie Hamilton at ADAPEI@columbus.rr.com.

ADAP Champion Eddie Hamilton

ADAP Emerging Leader of the Year: Kevin Maloney
When Kevin Maloney took the stage to accept his award as ADAP Emerging Leader, it was his first public speech as an HIV/AIDS advocate in front of a live audience.  During his heart-felt, passionate speech he talked about his struggles, reflected on his past, and on the history of AIDS epidemic.  In a memorable line, he addressed the audience saying, “...many of you in this room tonight have lost thousands of friends, I offer you my condolences; and if I can offer you any solace, you played a part in saving my life and hundreds of thousands of others.”  Maloney's father was in attendance; he shared his personal experience about when he told his father that he had contracted HIV-infection and his father thought he was going to die.  He applauded his father for how far he had come in his understanding of HIV/AIDS, and he paid tribute to him (which his father received a standing ovation).  When Maloney's father arrived home he wrote him a letter, which has since been published online at TheBody.com.  Maloney used every opportunity during his remarks to remind the audience, and others, that “we need more resources.”  Maloney has served as the Deputy Director at the Community Access National Network (CANN) since February 2012.

ADAP Emerging Leader Kevin Maloney (center), seen with Florida advocate
Mario Perri and ADAP Advocacy Association CEO Brandon M. Macsata

ADAP Corporate Partner of the Year: Walgreens Co.
As part of the company’s commitment to serving people living with HIV/AIDS, Walgreens launched its HIV Centers for Excellence (COE).  By November 2011, Walgreens had certified more than 500 of its pharmacies as HIV COE in communities highly impacted by HIV/AIDS, as identified by the Centers for Disease Control and Prevention (CDC).  The Director of Walgreens' HIV Pharmacy Services, Glen Pietrandoni (who also serves on the aaa+ board of directors), accepted the award on behalf of Walgreens Co.  Learn more about Walgreens and what they are doing in the HIV/AIDS community by visiting http://www.hiv.walgreens.com.

ADAP Community Organization of the Year: AIDS Alabama
The success of most HIV/AIDS advocacy campaigns has always been driven by local activists, advocates and leaders.  Probably nowhere else in the United States is that true than in Alabama under the leadership of AIDS Alabama.  The South has been disproportionately impacted by the ADAP crisis, and Alabama hasn't been immune from the dreaded ADAP waiting lists.  Throughout the struggle, AIDS Alabama has demonstrated why it was awarded the ADAP Community Organization of the Year award.  Accepting the award on behalf of AIDS Alabama was its President & CEO, Kathy Hiers, and her colleague Nic Carlisle.  Hiers is a well-respected leader nationally when it comes to issues surrounding HIV/AIDS and its impact on the South.  With eight of the ten most infected states, and nine of the ten most infected cities being in the South, and with very limited resources, AIDS Alabama’s resourcefulness and forward-thinking strategies have allowed the doors to remain open in tough economic times.  AIDS Alabama was recently featured in a Dan Rather special report about AIDS in the South that can be viewed here, and in a short film called the "DeepSouth" which can read here.  To learn more about AIDS Alabama, visit http://www.aidsalabama.org.

ADAP Lawmaker of the Year: The Honorable Jim McDermott, M.C., Honorable Barbara Lee, M.C. & Honorable Trent Franks, M.C.
The groundbreaking Congressional HIV/AIDS Caucus was formed by Democrat Representatives Jim McDermott (WA-7) and Barbara Lee (CA-9), and Republican Representative Trent Franks (AZ-2).  Their bipartisan leadership earned them the ADAO Lawmaker of the Year award.  Accepting the award on behalf of her colleagues was the Honorable Barbara Lee in a taped acceptance speech.  She thanked the ADAP Advocacy Association's hard work to ensure that people living with HIV/AIDS have access to care and treatment through the AIDS Drug Assistance Program.  Combined they formed the bipartisan Congressional HIV/AIDS Caucus, which is the first of its kind in the Congress.  One of the policy areas of interest is improving the cash-strapped ADAPs and ending ADAP waiting lists.  To learn more about the bipartisan HIV/AIDS Caucus, visit its Facebook Fan Page.

ADAP Lawmaker of the Year Representative Barbara Lee,
see with Dab the AIDS Bear

ADAP Social Media Campaign of the Year: Maria’s Journal by Maria HIV Mejia
Social media is increasingly playing a major role in the grassroots advocacy efforts to improve access to care for people living with HIV/AIDS.  Maria’s Journal, started by Maria Mejia, has leveraged social media via video blogs, blogging, public speaking and press interviews to continually raise awareness about HIV/AIDS-related issues, combat HIV/AIDS stigma, answer questions, as well as advocate for the poor and disenfranchised.  During the ongoing Florida ADAP crisis, Mejia used her online presence to spread the word to the state’s Latino community, and others, to help galvanize support for the AIDS Drug Assistance Programs.  Maria has been HIV-positive since she was 18 years old, and was a previous recipient of ADAP services.  Maria’s Journal can be viewed online at http://www.youtube.com/user/Mariasjournal?feature=watch.

ADAP Social Media Campaigner Maria Mejia

ADAP Grassroots Campaign of the Year: Florida ADAP Campaign by FHAAN (via the AIDS Institute)

David Brakebill, a Florida HIV/AIDS advocate and member of Florida HIV/ADS Advocacy Netwwork (FHAAN), accepted the award on behalf of everyone within the FHAAN network.  By 2011, Florida's ADAP waiting list increased to over 4,000 low-income, infected individuals unable to receive available life-saving medications due to state funding shortages and program mismanagement.  This number represented fifty percent of the approximately 8,000 waiting list patients nationwide.  Due to this crisis, FHAAN expanded its membership to 1,300 members; it educated and trained its members on issues importance, like how to advocate for increased funding for the Florida ADAP program.  By the early 2011 legislative session, hundreds of members wrote their state legislators and the Governor asking for the needed funds.  The result: an increase of $2.5 million in recurring General Revenue funding for the Florida ADAP program and a reduction to the ADAP wait list.  The importance of their achievement is underscored by the fact it was it happened by convincing a hard-line Republican dominated legislature and governor to appropriate the needed funds.  FHAAN invested heavily in staff time and unfunded resources to build FHAAN into what it is today with over 1,300 members representing every region of the state of Florida.  The network is a fully functioning general body with task specific committees and a convening group that ensures that consumer/client leadership is in place throughout the network. To date, FHAAN is still the only statewide advocacy organization in Florida with the capacity and reach into every county. FHAAN is a program of The AIDS Institute.

David Brakebill, accepting the ADAP Grassroots Campaign award,
seen with Maria Mejia

ADAP Media Story of the Year: Iowa Insurance Pool a colossal failure by Andie Dominick, Des Moines Register
Andie Dominick is an editorial reporter for the Des Moines Register. The Register submitted monthly editorial beginning in December 2011 through June 2012, promoting a change in the state statute and the state policy that barred third-party payee like the state AIDS Drug Assistance Program from paying premiums for the state high- risk pool and the state-run pre-existing insurance plan (PCIP).  The Iowa ADAP had requested a change in policy in the PCIP, and the Register supported that position in their opinion pieces.  The reporting prompted two hearings in the Iowa Senate and the drafting of legislation to allow for third-party payers in these programs. At the same time, the Register uncovered poor administration and use of funds, and a lack of transparency in the operation of the programs.  Although the Republican-led House did not pass the final version of the legislation passed by the Democrat-led Senate, the stories may still have a substantial impact on how the state sets up the health insurance exchange or approaches other issues related to care of persons with HIV/IADS.  The articles were remarkable in their scope and breadth, and in the action they prompte in the State Senate.  They required months of investigation, and led to other articles in papers like the Washington Post (Michelle Andrews 03/19/12).

ADAP Advocacy Association Board Member Michelle Anderson,
seen with Lepena Reid

To watch an archived video of the ADAP Advocacy Association's 2nd Annual ADAP Leadership Awards Dinner, or presentations from the 5th Annual Conference, please visit http://www.adapadvocacyassociation.org/events_08_2012_agenda.html.

HIV Prevention in a Pill; Is it a good or bad thing for struggling AIDS Drug Assistance Programs?

The ADAP Advocacy Association -- in partnership with Community Access National Network and Housing Works -- held its 5th Annual Conference in Washington DC at the Westin City Center from August 19th-21st. The theme: AIDS Drug Assistance Program Crisis: "STAMP" Out ADAP Waiting Lists!

The opening day of the conference featured a town hall-style meeting to discuss Pre-Exposure Prophylaxis for HIV prevention, or what has commonly been called PrEP. HIV Prevention in a Pill; Is it a good thing or a bad thing for AIDS Drug Assistance Programs? provided a platform for all sides of the policy debate to share its perspective on PrEP. The session was moderated by Michael Shankle, Director of Prevention and Public Policy with HealthHIV. He started off the session asking the panelists to describe in one word what PrEP means to each one of them. The words from the panelists included "promising, possibility, opportunity, and risky."

The panelists included William McColl with AIDS United, Darryl Fore with the Cleveland Ryan White Planning Council, Kathie Hiers with AIDS Alabama, Joseph Terrill with the AIDS Healthcare Foundation, and Joey Wynn with Broward House. McColl and Fore represented the pro PrEP side of the debate, and Terrill and Wynn represented the against PrEP side, while Hiers offered the middle-of-the-road perspective.

While most agreed it’s yet another tool in the tool box to combat the epidemic, feelings on the topic were VERY mixed. The positions varied and the reaction from the crowd was just as mixed. The following summarizes the panelist positions...

AIDS Healthcare Foundation position:
PrEP approval was fast tracked without regard for the potential increase in the risk of developing resistance if taken inconsistently, the possibility of increasing the likelihood of a Truvada resistant strain of HIV and the potential for increasing high risk behaviors among MSMs. The FDA approval moved forward without a hard requirement for an HIV test before a prescription, only "recommending" a test. Current concern is the push for Medicaid funding to cover PrEP. AHF doesn't think this would be a good use of public funds. The cost, implementation and monitoring of those for whom PrEP is prescribed are also concerns.

AIDS United Position:
AIDS United works with the Mapping Pathways project to help research the best means to provide information to policymakers and opinion leaders about the use of anti-retroviral drugs for prevention. AIDS United believes that PrEP is one of several new tools that will play a role in lowering new infections in the US. Like every new technology it requires ongoing and careful study to ensure that it is being used appropriately and with the least risk and that it is made available without regard for income or population disparities. That said it is a promising intervention and should continue to be explored.

AIDS Alabama Position:
PrEP adds another tool to the prevention toolbox that furthers our efforts to prevent new infections, a goal shared by everyone. However, the biggest question is a financial one. Do stakeholders push for public payment when many persons currently living with HIV disease are unable to obtain a steady supply of ARVs? Obviously all persons living with HIV/AIDS should be our top priority in ensuring that treatment is available. What are the future medical consequences for persons who do not adhere and who contract the virus, as well as long-term safety and fetal exposure issues in general that are unknown? On the other hand, persons who can afford to utilize PrEP should have every right to do so. AIDS Alabama believes that there is a benefit for persons consistently at high risk, including sex workers and people in discordant relationships.

Darryl Fore (Patient Advocate):
The PreP study is an opportunity to collect relevant data to supplement the data derived from the HIV vaccine trial. How will the PreP study affect the various HIV+ and HIV- populations, including gay men, women, seniors, youth, sex workers, IV drug users and prison populations. What are the conceived and un-conceived risks in participating in this study?

Broward House Position:
PrEp involves giving expensive HIV Medications to HIV negative individuals for an extended period of time to prevent HIV transmission. The basic concept for this intervention has good intentions, but the reality of existing implementation makes this a very bad idea as it is currently structured. South Florida local consensus statement: The Broward County Prevention Planning Partnership held a meeting May 11th 2011; a consensus statement was read, debated, and a consensus was reached. It reads, “Affected areas with large HIV communities should oppose this intervention until after 2014 and further clinical trials are completed & results analyzed.” Many local advocates, agencies & popular opinion leaders are opposed to this effort, and see no benefit from a public health or community perspective. The risks far outweigh the benefits."

A significant portion of the discussion centered around the five points of concern raised by Joey Wynn, which included:

1) Data surrounding condom use is mixed. Many gay men report the perception that they can now “Not have to use condoms if they take this medication” this absence of condom use is growing as an expectation for gay men not well versed in the iPrEx study. (@ IML referring to this as “Alternative to condoms” causing a strong response for & against the topic at the event).

2) Higher risk activities are already increasing in South Florida, as evidenced with soaring STD rates and increasing HIV rates. This “newfound invincibility to HIV” undermines our existing HIV Prevention strategies; not to mention - Hep. C, MDR gonorrhea, and other STDs.

3) Financing of the expected system of support & care not available in most areas, especially in the south, where HIV rates among gay men of all races is highest. The weekly counseling, ample supplies of condoms, support groups & risk education, as well as time for physicians to teach how to properly use this medication are not widely available. Little to nothing was provided to those gay men already using this medication that we surveyed; a prescription was written and filled. Perceptions among gay men vary widely on how often to take this, often disregarding the label instructions. Some choose to take this “only on weekends”, or just before a sexual encounter. Staffing resources do not have additional capacity to provide this service and will have to choose between traditional prevention efforts or PrEP.

4) Using Truvada as the agent is a REALLY BAD IDEA! A) this optimal backbone regimen is involved with a huge majority of treatment options currently in use in the United States. B) When taken incorrectly, or by people that think they are negative but are not, resistant strains WILL emerge. A better solution would be generic Combivir. It is vastly less expensive, poses no serious risk to the treatment therapies in use across the country in terms of resistance, and offers a history of efficacy in mother to child transmission reduction over the past 15 years.

5) This controversial intervention distracts us from our larger mission to achieve the National HIV AIDS Strategy(NHAS). We need to focus on getting positive people into care, get them on therapy and get them to undetectable viral loads, and substantially reduce new infections. HPTN 052 shows at least a 96% reduction in infections. This is double the possible best case scenario of PrEP and is the better route for the reduced funding we are experiencing nationwide.

The Town Hall meeting didn't appear to change anyone's mind, but it most certainly provided an excellent forum for the free-flowing exchange of ideas. At the end of the Town Hall meeting, Shankle had everyone write down the one word they thought of PrEP, to sum up the words everyone seemed cautiously optimistic at this time. HealthHIV developed this word cloud to summarize the feelings from those stakeholders in attendance:

President Obama Nixes IAC Appearances, Opting for “Video Greeting” Instead

**Reprinted with permission from Housing Works**

Posted by Sunny Bjerk , July 17, 2012

Courtesy of CBS News

In an election year, it’s hard to criticize the President without someone asking if that means you’re endorsing this guy. But when it was announced yesterday that President Obama will not make an in-person appearance at the 19th annual International AIDS Conference and will instead send a “brief video message” to IAC attendees, conference organizers and global AIDS leaders knocked the President for his seemingly indifferent response to the IAC’s return to the U.S. and failing to demonstrate his Administration’s commitment to fighting HIV/AIDS at home and abroad.

Charles King, President and CEO of Housing Works, called President Obama’s decision not to speak a severe miscalculation. “He is giving up an opportunity to show real leadership on AIDS here in the US and abroad.” The President’s decision to send a video message was a major let down for IAC attendees and came after months of speculation about whether or not the President would make an appearance. With the formal announcement made less than a week before the start of the IAC, which is scheduled to begin on Sunday morning, July 22nd, HIV/AIDS leaders are now calling on the Obama Administration to demonstrate its commitment to battling the epidemic by restoring the proposed cuts to PEPFAR, the President’s Emergency Plan for AIDS Relief and taking steps to reduce the number of people on the waiting list for AIDS Drug Assistance Program (ADAP) which provides medications to uninsured and low-income people across the country.

Others are calling the criticisms leveled against President Obama misleading, redirecting the focus on the HIV/AIDS measures his Administration has overseen. Programs and examples include $1 billion for ADAP programs—an increase of $67 million from previous fiscal years—and increasing funding for the Ryan White AIDS Drug Assistance Program by $75 million. Others champion the drafting and passing of the Affordable Care Act, which will cover many new populations under the revamping of Medicare, including those with pre-existing conditions, children with HIV/AIDS, individuals and families with an income below 133% of the Federal poverty line, and individuals no longer having to wait for an official AIDS diagnosis to be eligible for Medicare.

Is it a mixed bag? Absolutely. It’s undeniable that President Obama’s decision not to speak at the IAC feels like a slap in the face, considering the steady rates of HIV/AIDS infection in the country and the simple logistic fact that the conference is happening in his backyard. Who knows. Maybe he doesn’t want to run into George W. Bush, who is also scheduled to speak at the conference. Let’s hope President Obama’s actions in the next year ring louder than his video greeting.

Ohio Update: Success for HIV-Positive Patients

By: Imogen Reed, guest blogger

Ohio’s AIDS advocates and supporters have, once again, been successful in their bid to stave off the advancement of the proposed regulatory changes to Ohio’s AIDS Drug Assistance Program (ADAP). During a recent meeting of the Joint Committee on Agency Review, Ohio’s Department of Health (ODH) pulled the item. In so doing, they identified the need for further review relating to both procedural and business impacts of the proposed changes.

Understanding the Proposed Changes

As discussed in previously, the proposed changes altered both the medical and the financial criteria which needed to be met in order to qualify for treatment under ADAP. Crucially, the proposals included reducing the qualifying CD4 count from 350 to 200, and reducing the financial means test qualifying level to as low as $11,000. As per the ODA, the proposed changes were intended to address the shortage of available funds in place to support Ohio’s ADAP. The ODA indicated that, by altering the program’s eligibility criteria, and in turn reducing the numbers of HIV positive patients entering the program, funds could be more effectively targeted so as to ensure that the treatment of the sickest and most vulnerable patients was possible.

In the months preceding the review meeting, much criticism had been levied at the above proposals. This criticism has come, not only from patients, but from religious groups, community groups and medical practitioners alike. As per the critique from Tom Myers, General Counsel for AIDS Healthcare Foundation:

"Changing Ohio’s medical-eligibility criteria for its ADAP, such as reducing the qualifying CD4 count from 350 down to 200, as this rule change does, is actually a form of rationing of lifesaving HIV medicines".

Dr. Thai Nguyen, an AIDS Healthcare Foundation medical provider, who is responsible for the care of over 400 HIV/AIDS patients, stated:

"While we recognise that there is a shortage of funds in the Ohio HIV Drug Assistance Program, and the ODH is trying to put in place measures to ensure that those who are the sickest have access to antiretroviral medications, I argue that adding stipulations to ration antiretroviral medications is an act that directly contradicts ODH’s mission statement, the core principles on which it operates and the national and international scientific consensus on the treatment of HIV".

Pulling the Reforms: What does it mean for HIV-positive patients in Ohio?

This week’s news that ADAP reforms would be pulled for further review is doubtless good news for Ohio’s HIV/AIDS advocates. Indeed, it represents their third victory against the reforms in six months. As per Eddie Hamilton, founder of the ADAP Educational Initiative:

"We are thrilled that this item was pulled from the JCARRS meeting agenda earlier today".

Thus, for the time being, the program’s eligibility criteria remain unaltered. Moving forward, however, the Ryan White Program is due for re-authorization in 2013 and the ODH has not committed itself to the status quo; rather to further policy review. As developments are so recent, there is little literature which speculates on the outcomes of this likely policy review. Any such review is, however, likely to focus on several key policy factors.

The Increasing Numbers of HIV Positive Patients

There is concern that the number of people testing positive for HIV-infection is on the increase. This has led some to describe America as suffering from an AIDS epidemic. Figures collected for the State of Ohio in during 2008/9 identified 16,283 people as HIV positive, and estimated at an additional 5000 undiagnosed cases. Additionally, 7,613 Ohians had received an AIDS diagnosis, representing 7.8 per 100,000 Ohians. Thus, any alternative proposed reforms must address both the need to provide for increasing patient numbers and the need to identify epidemiological demographics so as to target treatment.

Financing Treatments

Though some HIV-positive individuals in Ohio are holders of private medical insurance, many are not. Thus, it is crucial that the State reforms direct funds towards those who are not able to access treatment through another means. Nationally, Medicaid is a primary funding source for the treatment of patients with advanced AIDS diagnosis, as qualification for funding is based upon the ability to prove permanent disability. Childless adults who are HIV-positive may not, however, qualify for Medicaid. For these adults, the ODH’s Federal Ryan White HIV/AIDS program offers limited coverage. The status and provision for adults treated under the Ryan White program is likely to be a focus of ODH reviews.

Match Funding Requirements

Any review of funding must factor in the need for States to match Federal funds with their own resources when supporting patients under the Ryan White Program. With the Ohio AIDS Drug Assistance Program constituting the largest part of the Ryan White Part B Program, completion of a comprehensive match funding exercise will be essential.

Medical Need

The biggest criticism levied at the ODH’s previous attempts to reform the ADAP have centred on the adjustment of support thresholds. As per the ODH, the purpose of these proposed adjustments was to enable staff to direct treatment towards their least well patients. In a review, the ODH must consider both the ethical and the long term financial implications of not treating diagnosed patients on a timely basis.

Healthcare Reform 2014

Reforms of the ADAP must be considered alongside the major reforms which are expected within the Affordable Care Act (ACA). As the ACA reforms will significantly impact upon several important HIV/AIDS programs, reforms of the ADAP must be forward looking. Emphasis must be placed on ensuring that, post ACA reform, a safety net remains available to individuals who are HIV-positive.

Implementation of the National AIDS strategy

President Obama’s National AIDS Strategy aims to reduce the number of people who become infected with HIV and strives to increase access to care for those who are infected, in turn, improving their health outcomes. Further, it aims to increase consistency of care, reducing regional disparities within treatment programs. The strategy is accompanied by a Federal Implementation Plan, which identifies steps to be taken by Federal Authorities during the implementation process. The plan sets out key goals, which should be considered by the ODH when reviewing HIV policy decisions. For example, the plan states that US Federations should aim to:

‘Reduce the HIV transmission rate, which is a measure of annual transmissions in relation to the number of people living with HIV, by 30%’.

When reviewing funding and medical eligibility specifications under the ADAP, the National Aids Strategy should be considered. This strategey encourages Federal Governments to take a more strategic, streamlined and comprehensive approach to reforms. For example, by developing sound HIV awareness campaigns and increasing access to STD Kits, the OHD could reduce the spread of infection, which in turn could free up resources for individuals who test HIV-positive.

HIV Criminalization: Researchers Need Your Feedback

The ADAP Advocacy Association (aaa+), like most HIV/AIDS advocacy organizations, is deeply concerned about the growing number of HIV Criminalization laws that exist in the United States. While our mission has a laser-like focus on only issues relating directly to the AIDS Drug Assistance Programs (ADAPs), fighting back HIV Criminalization laws impacts EVERY facet of HIV/AIDS policy, as well as the behavior of people who are HIV-positive, and the attitudes toward people who are living with HIV infection. To that end, aaa+ wanted to share an important ongoing research study.

A survey (click here) of people with or affected by HIV concerning their attitudes about criminalization of HIV non-disclosure, potential exposure or transmission. It would be very helpful if as many people completed the survey, regardless of serostatus.

The principal investigator is Laurel Sprague, at Eastern Michigan University. Laurel is a woman living with HIV who is also the North American regional coordinator of the Global Network of People Living With HIV (GNP+). She's a great advocate and has extensive expertise in survey research. She's also been a consultant on the development and implementation of the GNP+ Stigma Index.

Hopes are for a large enough response to have statistically meaningful numbers of key populations including women, transpersons, people who use drugs, migrants, sex workers and those engaged in survival sex, as well as everyone else. The survey is open to people with HIV as well as those who are HIV negative or don't know their HIV status.

Preliminary results will hopefully be shared at the International AIDS Conference in DC next month. The results will be posted at www.seroproject.com.

Once again, here's the link:

https://www.surveymonkey.com/s/HIVandtheCriminalLaw

ADAP Leadership Awards: It's time to recognize leaders working to improve the AIDS Drug Assistance Programs

The ADAP Advocacy Association (aaa+) will host its 2nd Annual ADAP Leadership Awards Dinner on Monday, August 20th at 7:00 pm in Washington, DC. The dinner will be held in conjunction with its 5th Annual Conference, being held at the Westin Washington DC City Center on August 19th-21st. The purpose of the dinner is to recognize individual, community, government and corporate leaders who are working to improve access to care and treatment through the AIDS Drug Assistance Programs.

Last year, aaa+ announced that it would host its 1st Annual ADAP Leadership Awards Dinner because it felt it was important for ADAP stakeholders to step back and reflect on the good work being done on ADAP by so many leaders - especially since the crisis itself had overshadowed much of the advocacy work. CLICK HERE to read more about last year's dinner and award recipients.

A Call for Nominations has been issued for the following awards:

• ADAP Champion of the Year (individual)
• ADAP Emerging Leader of the Year (individual)
• ADAP Corporate Partner of the Year
• ADAP Community Organization of the Year
• ADAP Lawmaker of the Year
• ADAP Social Media Campaign of the Year
• ADAP Grassroots Campaign of the Year
• ADAP Media Story of the Year

SUBMIT NOMINATIONS HERE

“While the ongoing ADAP crisis has continued longer than anyone would have liked, or imagined, so too has the persistence and commitment of the countless stakeholders in the HIV/AIDS community fighting to bring an end to these dreaded waiting lists,” said Brandon M. Macsata, CEO of the ADAP Advocacy Association. “Anyone who attended the 1st Annual Awards Dinner could tell you, it was an extremely uplifting and motivating event because it recognized many household names within our community, but also put the spotlight on some new faces. We anticipate this year’s event to be equally inspiring.”

The ADAP Champion of the Year is an award recognizing an individual who has demonstrated his/her commitment to promoting and enhancing ADAPs. Richard "Dab" Garner of Dab the AIDS Bear Project was the 2011 ADAP Champion of the Year.

The ADAP Emerging Leader of the Year is an award recognizing an individual who has demonstrated his/her commitment to promoting and enhancing ADAPs. The individual should be someone who is relatively new to the ADAP advocacy community, evidenced by his/her activities over the previous 12 months. Jason King of AIDS Healthcare Foundation was the 2011 ADAP Emerging Leader of the Year.

The ADAP Corporate Partner of the Year is an award recognizing a for-profit corporation that has demonstrated its commitment to promoting and enhancing ADAPs. Neil Romano & The Romano Group LLC, was the 2011 ADAP Corporate Partner of the Year.

The ADAP Community Organization of the Year is an award recognizing a not-for-profit corporation that has demonstrated its commitment to promoting and enhancing ADAPs. The organization should be a local or statewide organization providing advocacy, supports or services. NOTE: Nominations for national organizations will not be accepted. Stephen Gunsallus & Counseling Ministries.Org was the 2011 ADAP Community Organization of the Year.

The ADAP Lawmaker of the Year is an award recognizing a local, state or federal elected lawmaker who has demonstrated his/her commitment to promoting and enhancing ADAPs. The Honorable Alcee Hastings (D-FL) was the 2011 ADAP Lawmaker of the Year.

The ADAP Social Media Campaign of the Year is an award recognizing a social media-style campaign that has demonstrated its commitment to promoting and enhancing ADAPs. The campaign should have successfully engaged people effected and affected by HIV/AIDS fighting to improve access to care under the ADAP using social media outlets, such as Facebook, LinkedIn, Twitter, YouTube, etc. Mark King & My Fabulous Disease was the 2011 ADAP Social Media Campaign of the Year.

The ADAP Grassroots Campaign of the Year is an award recognizing a grassroots level campaign that has demonstrated its commitment to promoting and enhancing ADAPs. The campaign should have successfully engaged people effected and affected by HIV/AIDS fighting to improve access to care under the ADAP at the local level. Butch McKay & Positive Living Conference was the 2011 ADAP Grassroots Campaign of the Year.

The ADAP Media Story of the Year is an award recognizing reporting that has demonstrated a news media outlet's efforts to cover ADAPs. Charles Blow & "HIV SOS" was the 2011 ADAP Media Story of the Year.

To submit nominations, go to http://www.adapadvocacyassociation.org/pressroom.html. To learn more about the 2012 Annual ADAP Leadership Awards, 2012 Annual Conference, ADAP waiting lists, or the ADAP Advocacy Association, please contact Brandon M. Macsata by email at info@adapadvocacyassociation.org.

National Hepatitis Awareness Month

By: Kevin Maloney, Deputy Director, Community Access National Network (CANN)

This month is National Hepatitis Awareness month, and Tomorrow, May 19th has been designated by the U.S. Centers for Disease Control & Prevention (CDC) as National Hepatitis testing day.

It is estimated by the CDC that 1.2 million Americans are living with HIV-infection and it is estimated that 1 in 3 living with HIV-infection are also co-infected with Hepatitis B (HBV) or Hepatitis C (HCV). There is both acute and chronic Hepatitis C. Acute HCV is caught within the first 6 months of becoming infected, while chronic Hepatitis C can persist for as long as 20 + years, and both can be asymptomatic. Viral hepatitis progresses faster among persons with HIV-infection and persons who are infected with both viruses experience greater liver-related health problems than those who do not have HIV-infection. Although antiretroviral therapy has extended the life expectancy of persons with HIV-infection, liver disease—much of which is related to Hepatitis B and Hepatitis C infection—has become the leading cause of non-AIDS-related deaths among this population.

People living with HIV-infection who are co-infected with either Hepatitis B or Hepatitis C are at increased risk for serious, life-threatening complications. As a result, all persons living with HIV-infection should be tested for Hepatitis B and Hepatitis C by their doctors.

Hepatitis C increases the risk of death for patients with AIDS by 50%, according to the results of a large study published in the online edition of Clinical Infectious Diseases this month. A fifth of these deaths were attributable to liver-related causes, five times the rate seen in people with AIDS who were not co-infected. The investigators also found that a third of co-infected patients were unaware of their hepatitis C infection.

Below are some more facts from the CDC:

About 25% of individuals infected with HIV in the US are also infected with HCV, and an estimated 10% of individuals infected with HIV are coinfected with HBV.

About 80% of injection drug users (IDUs) with HIV infection also have HCV.

HIV coinfection more than triples the risk for liver disease, liver failure, and liver-related death from HCV.

About 20% of all new HBV infections and 10% of all new Hepatitis A (HAV) infections in the US are among MSM. For MSM not infected with HBV or HAV, any sexual activity with an infected person increases their risk. In particular, unprotected anal sex increases the risk for both HBV and HIV among MSM, and direct anal-oral contact increases the risk for HAV.

Compared with other age groups, a greater proportion (about 1 in 33) of persons aged 46–64 years are infected with HCV.

Chronic HCV is often "silent," and many persons can have the infection for 20 to 30 years without having symptoms or feeling sick.

In the US, HCV is twice as prevalent among blacks as among whites.

The following is some general information about Hepatitis C.

What are the symptoms of acute Hepatitis C?

Approximately 70%–80% of people with acute Hepatitis C do not have any symptoms. Some people, however, can have mild to severe symptoms soon after being infected, including:

Abnormal liver function tests (ALT/AST numbers)

Fever

Fatigue

Loss of appetite

Nausea

Vomiting

Abdominal pain

Dark urine

Clay-colored bowel movements

Joint pain

Jaundice (yellow color in the skin or eyes)

How is Hepatitis C spread?

Hepatitis C is spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected. Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants.

People can become infected with the Hepatitis C virus during such activities as:

Sharing needles, syringes, or other equipment to inject drugs

Needle stick injuries in health care settings

Being born to a mother who has Hepatitis C

Particularly increasing and alarming is sexual transmission of HCV in large urban areas..ie..NYC, San Francisco, Washington D.C.

Less commonly, a person can also get Hepatitis C virus infection through sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes.

Treatment Options:

Hepatitis B and C can be cured. The earlier the infection is diagnosed the better there is a chance at curing it. Though, with new medicines and much more in the pipeline – chronic Hepatitis C sufferers are also finding it easier to cure Hepatitis C. Many clinics have the capability of doing rapid HCV screenings, much like the HIV test where a patient's status can be determined in 20 minutes. Treatment options for Hepatitis C are becoming more effective and less toxic to the body. !