Browsing Category: Policy/Advocacy

Finding a Way to Get Through This: My Story of Being Tested for HIV After Exposure

Jimmy Schneidewindby Jimmy Schneidewind, Public Policy Associate

The most difficult three months of my life were the three months I spent wondering if I was HIV positive. I suspect that similarly, they were also three of the most difficult months my family has ever endured. Though I had volunteered in numerous HIV testing clinics and had trained hundreds of HIV educators on the values of getting regularly tested for HIV, there was nothing that could have prepared me or my family for the stress, anxiety, and heartache that we felt when my own status was in doubt.  Nearly three years later, I can still recall with extraordinary vividness the thoughts and emotions that ran through me during those months, and the pain that I felt as I considered what the rest of my life would be like if I were to contract HIV at age 24.

I had been living in Mozambique, a Portuguese-speaking country found on the south-eastern most part of Africa, for 14 months when I was exposed to HIV. I lived in a small rural village called Nicoadala (pronounced: nick-wa-dah-la) where I worked as a consultant to a civil group of Mozambicans who were working in collaboration with an international non-governmental organization to build up the health infrastructure of the town. Overall, I was enjoying my experience, though I would often be consumed in my private time by feelings of isolation as the only American.

Although I was aware that I had been exposed to HIV, the notion that I might have contracted the virus was not one that immediately dawned on me, strangely enough. It started as a small seed of doubt and ultimately morphed into an overwhelming panic, the intensity of which was almost paralyzing. I think I was hoping to wake up one day and realize that it had not really happened or that I would eventually succeed in convincing myself that it wasn’t really as serious as other cases of HIV exposure. After a month, I was completely taken over by fear, and belatedly took the two kilometer walk from my house to the local hospital where I had encouraged hundreds of Mozambicans to get tested for HIV, but had never once been tested myself.

The only available HIV tests in Mozambique are rapid tests. This testing method returns results in about 20 minutes, however, there is usually a latency period of between six weeks to three months for the virus to become detectable in most peoples’ bodies. When the nurse took my blood (note that the vast majority of rapid tests in the United States use a mouth swab) and dripped it onto the rectangular testing area, I turned my head away, unable to watch as my results emerged. The irony was not lost on me that as a white, heterosexual, upper-middle class, college-educated, American male, from an overly-supportive two parent family, I was probably the least likely person on the planet, statistically, to become infected with HIV. And yet, there I was, half a world away from family and friends, waiting and wondering; scared.

Though my initial test results came out negative, I spent the next two months in a state of melancholy while I waited for the three month mark post-exposure when I could finally be sure of my status. I wondered if my family would accept me. I wondered which of my friends would still hug me. I wondered who would want to marry me, and how I would ever become a father. Who would love me if I had HIV? As I contemplated what life would be like if I had HIV, I remember feeling as stripped down to my fundamental core as I imagine a human can feel and thinking that these are the same fears that everyone has when they are uncertain about their health status.

The reasons why I was terrified to get my test results then are the same reasons why I choose to get tested now. The faces of people who I love and for whom I care deeply drift into my mind whenever I am waiting to get tested or awaiting my results: My parents, my brother, my aunts, uncles, cousins,  and my friends. I realize in those moments when I am most scared that my life is valuable primarily because of the love given to me by all those faces I see and my decision to get tested derives purpose from that realization.

When I called my parents to tell them that I knew for certain that I had been exposed to HIV, my mom spoke first, after a slight pause, and said, “Whatever the results are, we will find a way to get through this.” I will never forget that. In varying degrees, I am still afraid every time I go to get tested, but I think the fear is good because it is a reminder of why I now get tested regularly and what is truly important to me. I continue to get tested for HIV because I want to be proactive and responsible about my health; I find meaning in my testing because I recognize the love people have for me, and the love I have for myself.

Although this blog was written in recognition of National HIV Testing Day, June 27, it appears on our website and in our Weekly Update after the day as a reminder that it is important to get tested no matter what day it is. AIDS United encourages everyone to find out their HIV status by getting tested today and by making it a regular part of your health check-up routine. To learn more about National HIV Testing Day, please visit the National Association of People Living With AIDS (NAPWA) website. To find the testing site closest to you, please use this link.


AIDS United Adopts Position on Fiscal Policy

by Ronald Johnson, Vice President of Policy and Advocacy

With the U. S. Treasury Department’s August 2 deadline for raising the federal debt limit looming like a Sword of Damocles over their heads, Congress and the White House are intensifying efforts to reach an agreement that would allow a debt limit increase bill to be passed.  There is near total recognition of the political reality that raising the federal debt limit will require an agreement to reduce significantly the federal deficit and long-term debt owed by the U.S. government.  However, there is little yet that approaches a broad consensus among Congressional Democrats, Congressional Republicans, and the President on how to reduce the federal deficit and the debt.

In a previous Policy Update, we noted why the current debate over federal fiscal policy matters to the HIV/AIDS community (click here to see the earlier article).  Those reasons have become only firmer in the subsequent weeks.  Real threats remain to the current structure of and funding for Medicaid and Medicare and to discretionary spending levels for health care, HIV/AIDS programs and services, and safety net programs for low-income and other vulnerable populations.  Some of the current proposals or ideas would result in cutting spending starting in FY 2012 back to levels that would necessitate devastating service cuts.  The 2012 fiscal year begins Oct. 1, 2011.

Given that the important fiscal policy decisions made by Congress and the administration over the next seven weeks will have a huge impact on federal spending and on Medicaid and Medicare for the coming year and many years thereafter, AIDS United has adopted a policy position on the fiscal issues.

AIDS United recognizes that the size of the total federal deficit and the long-term debt owed by the United States together constitute a major problem that must be addressed.  AIDS United also recognizes that discretionary spending cuts will be a part of a final deficit reduction package.  AIDS United strongly rejects the concept that spending cuts should be the only component of a final deficit reduction package.  Therefore, AIDS United supports a balanced approach to deficit reduction that includes revenue growth and does not disproportionately cut funding for health and social safety net programs, and does not drastically alter Medicaid and Medicare.  AIDS United will oppose vigorously any proposal that attempts to solve the deficit and debt crisis at the expense of people living with HIV/AIDS, low-income people, and other populations that already experience unjust health, social, and economic disparities.

AIDS United will work to keep you informed of the fiscal policy debates and to provide you with Action Alerts and other tools to engage you in the process.  Congress and the President need to hear from all of us that the fiscal policy decisions matter to us and that we will not be silent or complacent.

Click here for more background materials on the potential impact of fiscal policies.

Click here for a more detailed guide to the federal budget and the deficit.

Final Funding Details of FY11 Budget

by Donna Crews, AIDS United Government Affairs Director

The funding details for fiscal year 2011 (FY 11) were released May 16. Although the general appropriations process was completed on April 14, when President Obama, Senate Majority Leader Harry Reid (D-NV), and Speaker of the House John Boehner (R-OH), reached a deal in the final hour to avoid a government shutdown, the work of allocating funds to programs within governmental agencies remained unfinished.

Public health programs as well as programs and agencies that specifically benefit people living with HIV were impacted by the final funding details. The majority of the cuts seen below are the result of the across the board 0.2% cuts that were implemented in all governmental agencies. Here is an update with final numbers.

  • Funding for syringe exchange programs (SEPs) remains available for use at the federal level and at the local level for the District of Columbia
  • The Centers for Disease Control (CDC) is funded at $5.66 billion, a $740 million cut across the agency.
    • The HIV/AIDS, Viral Hepatitis, STD and TB Prevention Center received an increase of $27,650 million
      • Health Departments $7,442,000
      • Surveillance $8,027,000
      • Enhanced testing $21,000
      • Improving HIV Program Effectiveness $13,015,000
      • HIV – National, Regional, Local, Community, and Other Orgs $3,037,000
      • Viral Hepatitis $6,000
      • STD  $49,000
      • Tuberculosis minus $3,947,000
  • Health Resources and Services Administration (HRSA), the primary Federal agency for improving access to health care services for people who are uninsured, isolated, or medically vulnerable, is funded at $6.27 billion, a $1.2 billion cut below FY10 level.
  • For the Ryan White Care Act (RWCA),
    • Part A, grants to eligible metropolitan areas, minus $358,000
    • Part B, grants to states and ADAP got an increase of $26,163,000.
      • AIDS Drug Assistance Program (ADAP) will total $885 million, an increase of $25 million, with $50 million set aside for the program that targeted the ADAP crisis (waitlist, decreased eligibility, and decreased formularies)
    • Part C, grants to HIV/AIDS clinics nationwide, funding will total $205,564,000, minus $819,000
    • Part D, grants to organizations for children, youth, women and families, is funded at $77,313,000, minus $308,000
    • Part F, AIDS Education & Training Centers (AETCs) grants for training and workforce development, is funded at $34,607,000, minus $138,000
    • Part F, dental grants for Dental Education, is funded at $13,511,000, minus $54,000
  • Housing Opportunities for Persons with AIDS (HOPWA) is funded at $334,330,000, minus $670,000 from FY 10 level.
  • Title X, funding for family planning, remains. It is appropriated at $299,400,000 million, minus $17,432 million from FY 10 level.
  • Teen Pregnancy Prevention Initiative is funded at $104,790,000, minus $5,189,000 from FY 10 level.
  • The Social Innovation Fund received $50 million in funding for FY 11
  • AmeriCorps State and National received $349 million in funding for FY 11

The Senate is expected to vote on both the House and Presidential FY 12 budget proposals as soon as tomorrow. Please e-mail your Senator TODAY and urge them to reject the House proposal, which would make severe cuts to Medicare and Medicare, programs that are essential to providing care to people living with HIV.

Asian-Pacific Islander HIV Awareness Day

By Julia Cheng, Zamora Fellow, AIDS United

Two AIDS Awareness Days in a week?  Yes!   Yesterday was HIV Vaccine Awareness Day and today is Asian-American and Pacific Islander HIV/AIDS (API HIV) Awareness Day.  Since we’ve already covered the importance of finding an HIV vaccine, I’d like to speak on API HIV Awareness Day.

I know that AIDS Awareness Days can feel somewhat perfunctory to some.  However, the importance of AIDS Awareness Days is in highlighting specific populations and issues.  Awareness days  remind us that AIDS isn’t an equitable disease, that all forms of discrimination precede negative health outcomes.  I have also heard it said often the HIV is a series of epidemics in the United States.  The point being: different communities, whether distinct by region or other social markers, face different barriers and challenges.

Why a day focused on APIs?  While currently APIs have low rates of HIV prevalence relative to other groups, APIs face increasing HIV infection rates along with consistently low testing rates according to the CDC’s latest data.  The API community is extraordinarily diverse, so just as we need to treat HIV in the U.S. as a series of epidemics, such is true within the API community as well.  At the same time, there is a vital conversation about Pan Asian-American needs, which is why, as much as I am loathe to speak about needs of a dynamic group, I am writing this blog piece.

Here is a brief description of just some of the key issues and barriers that I think face the API community in regards to HIV.

Sexuality: Though this is often discussed in our community, I feel as if many conversations about sexuality remain focused around politics and stereotypes.  More forthright conversation about sexual needs and health is needed but without forgetting the position of those who may not be able to open up about their needs.

LGBT: Issues of gender and sexual orientation may clash with perceived cultural values.  As in many places, sexual orientation continues to be perceived as a Western innovation despite a varied history of sexual orientation, sexual practice, and gender identification within Asian cultures.  Homophobia and transphobia are dangerous to the health of communities and individuals.

Mental Health: Asian American’s have low indicators of mental health and are unlikely to seek help for mental health problems.   Though there remains little research about Asian-American mental health, studies have suggested higher levels of depressive symptoms and API women ages 15 to 24 lead in the highest suicide rate among all ethnic groups in the nation according to the Department of Health and Human Services.  According to the Asian Counseling and Referral Service, forty percent of Southeast Asian refugees suffer from depression. For a population already under stress, stigmas around sex, being gay, being positive, can only exacerbate poor mental health and put individuals at greater risk for HIV.  Furthermore, poor indicators of mental health may also correlate with drug use that puts individuals at risk through the use of non-sterile syringes.

Culture and Language: Similar to other racial and social minorities, mistrust of the establishment and lack of cultural competency and language are barriers to positive health outcomes.  Asian-Americans face issues similar to other migrant communities.  While cultural specific attitudes depend on the individual; the ideas of “saving face” and not “making waves” are prominent among API communities.  In addition, conflicts of traditional versus modern medicine can present an unhealthy dichotomy of choices.

Unity: The API community should celebrate and recognize our diversity and understand it is in our own common interests to advocate and understand the wide range of needs within our community.  We also have unified needs, of which preventing and treating HIV are vital.

Lastly, own the issue.

It’s interesting to me that despite a rich and burgeoning field of scholars on Asian-American sexuality that the API community seems to lack ownership of HIV issues.  This morning I did a brief peruse of blogs that focus on (non-HIV specific) Asian-American issues and didn’t find much of anything on HIV Awareness Day.  This includes blogs that often dissect and examine Asian-American sexuality (which I feel is most, as the history and current perception of Asian-Americans is uniquely shaped by sex and gender).  While the Banyan Tree Project, the lead organization behind API HIV Awareness Day, is doing a great job to raise consciousness, it seems to me that a great challenge is taking that message and owning the issue, as evidenced by the low rates of testing among the APIs.  So while there are many key issues and barriers that face the API community you might feel like can’t take on yourself, you can own the issue.  Consider your risk for HIV, get tested, and encourage others to do the same.

Six Reasons the Republican Budget is a Potential Disaster for People Living with HIV

Bill McCollby William McColl, Director, Political Affairs

On Friday, April 15th the House passed Rep. Paul Ryan’s (R-WI) Fiscal Year 2012 (FY12) budget on a near party line vote of 235 to 193.  The Democrats voted unanimously against the bill while four Republicans switched sides to vote against it.  They were right to vote against it.  This budget has the potential to leave many people living with HIV/AIDS without any sure way of accessing treatment.

6 Major Issues for People Affected by HIV
What would the Ryan Budget mean for people living with HIV/AIDS or at risk of being infected?  After careful review here are six things AIDS United is most concerned about.  The Republican plan would:

1. Create block grants to the States for Medicaid reducing federal support by about 33% (or $1.4 trillion).

  • Few federal standards could survive and services would become available on a state by state basis more than ever before.  States that have expressed stigma towards people living with HIV could easily roll back funding for services for PLWHs.
  • Even states with waivers that currently provide services to people who are HIV-positive but not diagnosed with AIDS would have to find ways to cut back – many states could choose to limit this care.
  • Medicaid services would have to be cut to a barebones minimum – it would be hard to find a doctor or get an appointment, drug formularies would have to be limited.

2. “Privatize Medicare” is privatized as a voucher program to buy services from private health insurers for all people beginning in 2022.  This means anyone under 55 years old now would be impacted by this change.

The vouchers will not increase in value as fast as medical costs, so they are unlikely to cover the rates of purchasing insurance for people living with HIV.  A lot of people living with HIV would likely move from Medicare to Medicaid if services were available at all.

3. Repeal and defund the Affordable Care Act resulting in:

  • An end to prohibition of lifetime and annual insurance caps.
  • An end to pre-existing condition clauses.
  • Loss of Medicaid eligibility for many PLWH’s with incomes below 133% of the federal poverty level.
  • High out of pocket costs for drugs for people with access to Medicare to pay.
  • Potential loss of the Prevention and Public Health Awareness Fund.
  • Loss of coverage for young adults.

4. Result in potential loss of funding for the Ryan White CARE Act – non-defense funding for health care would be cut to below FY 2008 levels and would be capped for five years. Even though the CARE Act has enjoyed strong bipartisan support, such a funding reduction would mean that none of the parts would be able to keep up with the need – in fact the need would grow as people who had been accessing Medicaid and Medicare turn to the CARE Act for help. This might cause:

  • Likely increases in HIV ADAP waiting lists.
  • Increases and wait lists for access to doctor visits.
  • Cutbacks on supportive services such as case management, transportation, help with translation needs, food and nutrition services and more.

5. A potential loss of funding for the HIV prevention – likely to be cut to FY 2003 or even lower levels and then capped.

  • The overall Centers for Disease Control and Prevention budget was cut to 2003 level for the remainder of FY ‘11.  It is likely they would remain a target for even further cutbacks in resources and virtually certain that they would not be raised.
  • 6. A potential loss of funding for the Housing Opportunities for People with AIDS (HOPWA) program and other housing programs.

    • Although HOPWA only received a 0.2% rescission for FY’11, the rest of the housing budget was cut by billions of dollars.

    All of this plus cuts to education and other programs would amount to about $4.3 trillion in cuts.  In the meantime the budget would give tax cuts of $4.2 million to the wealthiest people in America.

    Sorry, AIDS United can’t buy this.  We’re opposing the changes of the Republican plan that would hurt people living with HIV plan including the drastic cuts to Medicare and Medicaid that would threaten the main sources of treatment and care for people living with HIV.  So what can you do?

    What to do?
    The bright side of this issue is that this budget is not binding.  The President laid out a budget plan that accepts the need to find ways to cut overall spending levels, but which clearly maintains Medicare and similar priorities.  New Members of Congress do not understand the importance of these programs to people in their districts and State.  It’s not too late to stop the erosion of health care in this country.  We urge advocates to plan meetings when your Representative and Senators are in town during their recesses (or to attend local town hall meetings which are generally held during the recesses).  Tell them:

    • That you oppose the Ryan budget and any other budget that will make it harder for people living with HIV to get access to Medicare and Medicaid for treatment
    • That cutting health care programs like HIV/AIDS treatment programs while giving huge tax breaks to people earning more than $250,000 is wrong and that you oppose it.

    AIDS United can help you plan your meeting with your Members of Congress when they are in town. Click here for a tip sheet for planning and implementing your meeting, or email jschneidewind@aidsunited.org with questions.  The current recess is now-May 1. The House of Representatives is also out May 16-22 and June 6-12 while the Senate recess is July 4-10.  Keep an eye out for an AIDS United webinar in May that addresses the Ryan budget, cuts to HIV and how to talk with your Representatives.

    FEM-PrEP Study Closes Early, Implications Yet to be Determined

    julia_chengBy Julia Cheng, Zamora Fellow, AIDS United

    On Monday April 18th Family Health International (FHI), the organizers of a clinical trial testing the combination antiretroviral (ARV) drug Truvada as an oral Pre-Exposure Prophylaxis (PrEP), announced that the FEM-PrEP study would begin to close.   FHI released a statement after a scheduled review by an Independent Data Monitoring Committee advised that the study of the effectiveness of using the drug to prevent HIV among African women at high risk for contracting the virus would be unlikely to come to conclusive results.

    For many in the HIV community, the closure of this study is disappointing.  Previous studies of Truvada and tenofovir (one of the ARVs contained in Truvada) had shown promising implications and advocates had hoped they were nearing a breakthrough in preventing HIV.  The CAPRISA trial released results in July 2010 showing that a microbicidal vaginal gel containing 1% tenofovir had an overall 39% effectiveness rate in preventing HIV and a 54% effectiveness rate for women who used the gel for the majority of their sexual encounters.  The iPrEX study, which used the same drug as the FEM-PrEP study, released its results in November 2010 showing a 43.8%  average reduced risk for men who have sex with men (MSM) and transgender women who have sex with men but a 72.8% reduced risk for those with high adherence to the drug regimen. PrEP and vaginal microbicides both have delivery methods that are helpful because they do not need to be applied or used during sexual intercourse and can be used without having to negotiate with a partner.  Since social inequities play a large role in determining those most affected by HIV, giving greater tools to people may have less power over their HIV exposure, particularly women, can play a huge role in reducing infection.

    Upon the announcement of the FEM-PrEP trial closure, both CAPRISA and iPrEx researchers released statements commending the researchers and participants of the trial, while urging caution at making conclusions from the still preliminary data.  They noted that this news needs to be studied further and that the study may have large implications for the use of PrEP and Truvada or conversely may have no significant impact on the existing science.  In the meantime, the Centers for Disease Control and Prevention (CDC) released a letter reiterating that its interim guidelines for PrEP only apply to MSM.  For now, little will change until more details of the study come to light as the researchers close the study and analyze their data.  Whatever the case, the closing of the FEM-PrEP trial at this point continues to show that communities and people at risk of HIV need more tools to prevent HIV that are supported by science.