Tag Archives: AIDS

AIDS: “The Unnecessary Epidemic”

by D Gregory Smith

This eloquent, excellent article is from The National Association Of People With AIDS/HIV (NAPWA) newsletter, Positive Voice. It outlines many of the challenges we face as a country- including homophobia, stigma, and stinginess- in getting HIV under control:

This is an exciting time for all of us who live with HIV or are affected by it. Theoretical models predicted for years that treatment-as-prevention could work, and the last year confirmed it. In the elegantly designed HPTN 052 trial, results showed that serodiscordant heterosexual couples had a drastically reduced risk of infection for the HIV-negative partner when the positive partner was receiving effective treatment with antiretroviral drugs.British Columbia didn’t wait for trial results. For several years, the province has aggressively sought to find and treat as many HIV-infected people as possible, and the numbers of AIDS deaths and new HIV infections are now coming down. Dr. Julio Montaner, father of the B.C. program, remarked recently that the falling number of (known) new infections was not the result of less testing, or of safer sex. That leaves only one plausible explanation: reduced community viral load.

So we can end this epidemic. It’s time to start calling it The Unnecessary Epidemic.

As NAPWA President and CEO told us in the previous issue of Positive Voice, ending the epidemic will take resources, resources, resources. Resources for high-impact prevention programs. Resources for treatment and support services for all who need them. Resources to fix an unfair health care system.

But it’s also going to take more than resources. It will take changes in public attitudes. Twenty percent of Americans living with HIV don’t know it. Some of them don’t because prevention and testing programs haven’t reached them. Other don’t because having HIV can be so stigmatizing that they would really rather die slowly than know their status.

So let’s look at some public drivers of HIV stigma, and then look at the consequences.

The evils of “second-hand sodomy”

On the site Conservapedia.com – think of it as Wikipedia for the “right”-minded – Americans for Truth (!) president Peter LaBarbera writes, Why isn’t there a concerted government effort – akin to the current anti-smoking campaigns – to reign in homosexual promiscuity – beginning with closing down all sex businesses (bathhouses) that facilitate homosexual perversion? (Of course, we favor closing down straight prostitution businesses as well.) We know that bisexual behavior (men on the “down low”) help spread dangerous diseases to the general population: how many deaths and illnesses have to result from “second-hand sodomy” before authorities take corrective action?

Translation: it’s all the gays’ fault. If we could just shut down all gay sex, the epidemic would go away. Never mind that a majority of African Americans living with HIV are women, in numbers that could not possibly be accounted for by some partners’ “down low” adventures, and HIV in Africa was a heterosexual disease from day one. LaBarbera is saying that sex he disapproves of is perversion, perversion leads to disease, and “second-hand disease” is tantamount to murder.

Just as bizarrely, Dr. Peter Duesberg continues to contend that HIV is harmless and AIDS is caused by gay sex and drug use. Somehow, we just don’t think most of the African American women living with AIDS have been having gay sex and sniffing poppers…. And never mind the experience of people with HIV who were on the ropes in 1996, when drug cocktails based on protease inhibitors were just coming into use, and eight weeks after we started our new drug regimens our viral loads were down, our T cells were up, and our dermatologists were telling us we didn’t have to come back anymore for our every-two-weeks appointment to zap new KS lesions. Practical lesson: control the HIV and the AIDS symptoms go away. Conclusion: the virus causes the symptoms. Discussion over, Dr. D.

Not victim-free expressions of opinion

We can laugh at these extreme opinions, but publishing them is not a victimless crime. Duesberg’s opinions delayed wide use of antiretroviral drugs (ARVs) in South Africa for years, and people died. The shame about non-majority sexual orientation spread by Conservapedia and others keeps people who know they should get tested from doing so and having to live with a positive result. Using criminal law as a (failed) tool to prevent new infections drives infected people and injection drug users underground, where prevention and treatment services can’t reach them.

How the Grinch stole your needle exchange

The 2013 federal budget just passed reinstates the former ban on federal funding for one of the most targeted, cost-effective HIV programs ever conceived: injection needle exchanges. The ban was one of many prices, just before Christmas, for passing any budget at all. The underlying thinking may have had something in common with Conservapedia’s panacea of outlawing gay sex: just say “there ought to be a law,” whether it’s a matter law can deal with effectively or not. It can’t, and we wonder whether many members of Congress demanding the ban knew that. Certainly those with competent health policy staffers did.

Naming stigma – and praising constructive action

As a community of people who live with HIV or serve those who do, we have a responsibility to call out stigma wherever we see – HIV stigma, homophobia, unease with transgendered people, the cruel expectation that people trapped in sex work or drug use are in control and should just go cold turkey and quit. This is more important than any quarrels we may have among ourselves about PrEP, condoms, or whether to concentrate on developing a preventive or therapeutic vaccine first (scientific accident will decide that for us).

 To join the National Association Of People with AIDS/HIV, click here.
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ADAP Watch 1/13/2012

by D Gregory Smith
ADAPs With Waiting Lists
(4,717 individuals in 12 states*, as of January 12, 2012)
State Number of Individuals on ADAP Waiting List Percent of the Total ADAP Waiting List Increase/Decrease From Previous Reporting Period Date Waiting List Began
Alabama 47 1% -44 October 2011
Florida 1,301 28% 135 June 2010
Georgia 1,275 27% -12 July 2010
Idaho 6 0.1% -3 February 2011
Louisiana** 628 13% 27 June 2010
Montana 11 0.2% -2 January 2008
Nebraska 17 0.4% 2 October 2011
North Carolina 126 3% 1 January 2010
Ohio 0 0% 0 July 2010
South Carolina 164 3% 0 March 2010
Utah 32 1% 0 May 2011
Virginia 1,110 24% 7 November 2010
* As a result of FY2011 ADAP emergency funding, Alabama, Florida, Georgia, Idaho, Louisiana, Montana, North Carolina, Ohio, South Carolina, Utah, and Virginia were able to reduce the overall number of individuals on their waiting lists.

** Louisiana has a capped enrollment on their program. This number represents their current unmet need.

 

ADAPs With Other Cost-Containment Strategies: Financial Eligibility
(445 Individuals in 6 States, as of November 9, 2011)
State Lowered Financial Eligibility Disenrolled Clients
Arkansas 500% to 200% FPL 99 clients (September 2009)
Illinois 500% to 300% FPL Grandfathered in current clients from 301-500% FPL
North Dakota 400% to 300% FPL Grandfathered in current clients from 301-400% FPL
Ohio 500% to 300% FPL 257 clients (July 2010)
South Carolina 550% to 300% FPL Grandfathered in current clients from 301-550% FPL
Utah 400% to 250% FPL 89 clients (September 2009)

ADAPs with Other Cost-containment Strategies (instituted since April 1, 2009, as of November 9, 2011)

Alabama: reduced formulary Arizona: reduced formulary Arkansas: reduced formulary Colorado: reduced formulary Florida: reduced formulary, transitioned 5,403 clients to Welvista from February 15 to March 31, 2011 Georgia: reduced formulary, implemented medical criteria, participating in the Alternative Method Demonstration Project Illinois: reduced formulary, instituted monthly expenditure cap ($2,000 per client per month), disenrolled clients not accessing ADAP for 90-days Kentucky: reduced formulary Louisiana: discontinued reimbursement of laboratory assays North Carolina: reduced formulary North Dakota: capped enrollment, instituted annual expenditure cap Ohio: reduced formulary Puerto Rico: reduced formulary Utah: reduced formulary Virginia: reduced formulary, restricted eligibility criteria, transitioned 204 clients onto waiting list Washington: instituted client cost sharing, reduced formulary, only paying insurance premiums for clients currently on antiretrovirals Wyoming: capped enrollment, reduced formulary, instituted client cost sharing

ADAPs Considering New/Additional Cost-containment Measures (before March 31, 2012***)

Alaska: reduce formulary Florida: lower financial eligibility Kentucky: reduce formulary Montana: reduce formulary Oregon: reduce formulary Puerto Rico: reduce formulary Tennessee: establish waiting list Wyoming: establish waiting list, lower financial eligibility, institute client cost sharing

Access to Medications (as of November 9, 2011)

Case management services are being provided to ADAP waiting list clients through ADAP (2 ADAP), Part B (9 ADAPs), contracted agencies (5 ADAPs), and other agencies, including other Parts of Ryan White (4 ADAPs).

For clients on ADAP waiting lists who are currently on or in need of medications, 11 ADAP waiting list states can confirm that ADAP waiting list clients are receiving medications through either pharmaceutical company patient assistance programs (PAPs), Welvista, or other mechanisms available within the state.

***March 31, 2012 is the end of ADAP FY2011. ADAP fiscal years begin April 1 and ends March 31. To receive The ADAP Watch, please e-mail Britten Pund at bpund@NASTAD.org.

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“The Race To End AIDS”

by D Gregory Smith

On Today’s Morning Edition from NPR, a story about HIV Treatment As Prevention:

AIDS Awareness

2011 has been a momentous year in the 30-year-old AIDS pandemic.

The big breakthrough was the discovery that antiviral drugs can prevent someone who’s infected with HIV from passing the virus to others. It’s nearly 100 percent effective. That led President Obama to declare earlier this month that the U.S. will expand HIV treatment in hard-hit countries by 50 percent.

As recently as last year, many of those experts were saying that just giving more people with HIV more drugs would never work. “For every one person that was put on antiretroviral therapy or treatment, we would have two to three new infections identified,” Dr. Eric Goosby, U.S. Global AIDS coordinator, says.

It looked like a losing game, but not anymore.

The new research shows that antiviral drugs not only save the lives of infected people, they also stop people from spreading the virus and causing new infections, if the drugs can be given early enough after someone gets infected. The new strategy is called “treatment as prevention.”

“So we suddenly are looking at a moment where we can treat our way out of the epidemic,” Goosby says. “That’s the turning point that we’re looking at.” Still, it’ll take decades to end AIDS, according to experts. But many say the world has to be much more aggressive about treating HIV.

But just the fact that this is being reported on and is being taken seriously is a big deal.

You can read and/or listen to the whole story here

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‘Montanans With HIV’ makes the paper

by D Gregory Smith
Map of USA with Montana highlighted
Image via Wikipedia

The Great Falls Tribune yesterday did a featured story on HIV in Montana with several sidebars on testing and the classification of the disease from AIDS to HIV stages 1-3. Along with Trisha Gardner of the Cascade County Health Department, Dean Wells of the Yellowstone AIDS Project and an anonymous man living with HIV in Great Falls, I was interviewed for the piece, which, among other things, focused on the stigma of persons living with HIV in the state.

Excerpt:

On average, about 20 Montanans are diagnosed with the disease every year, said Trisha Gardner, community health education specialist and HIV case manager at the Cascade City-County Health Department.

“The number of newly diagnosed cases has held pretty steady every year,” Gardner said.

Overall, the number of people in Montana living with HIV is increasing because they are living longer, she said.

While that number is on the rise, most in Montana never publicly disclose they have HIV, Gardner said.

“They don’t have to,” she said. “For the most part it’s kept a pretty private issue.”

Many who live with the disease in Montana fear losing their jobs, friends or family, and even becoming a social outcast.

“My view is that the stigma definitely reduced over the years, but it’s still there,” said Dean Wells, executive director of the Yellowstone AIDS Project in Billings. “Many of our clients live in fear of someone finding out about it.”

John, a pseudonym because he fears losing his livelihood, was diagnosed with HIV eight and a half years ago.

Trying to be honest and open after his diagnosis, John told his employer.

“It wasn’t a week later, they asked me to find another job,” he said.

Fear and stigma is still with us but there’s a lot of hope in current HIV treatment and prevention.
The key is to get tested. HIV unsuppressed in the body does damage- sometimes very significant damage- which  cannot be reversed by treatment.

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Wanted: Members For Montana’s HIV Community Planning Group

by D Gregory Smith

Are you interested in community service? Do you want to help shape Montana’s HIV policies, treatment strategies and prevention interventions?

English: The Red ribbon is a symbol for solida...

I have a challenge for you.

Montana’s Community Planning Group for the Prevention of HIV (CPG) needs active community voices from around the state to provide valuable input and experience regarding HIV/AIDS in Montana. I have been active in this group for the last four years, and I would encourage anyone interested to apply- especially if you are involved with HIV education, prevention, treatment and/or are a person living with HIV. From the DPHHS Website:

The Community Planning Group (CPG) is an advisory group instrumental in the planning and implementation of HIV prevention interventions in Montana. CPG helps ensure that target populations are represented in the planning of state prevention efforts. The CPG consists of 36 members and is coordinated by the Montana Department of Public Health and Human Services HIV/STD Section.

Membership in the CPG requires a firm commitment.  The following is a basic outline of what this commitment entails:

  • Attend and actively participate in all CPG meetings to the fullest extent of your ability.  This usually includes 4 meetings each year. Meetings typically include a full day on a Friday and a half day on a Saturday.  Travel expenses are paid.
  • Speak for your Community Representation to the benefit of the community group.  Each member is assigned to represent a specific community group and needs to be able and willing to do so.
  • Actively participate in a workgroup.  Workgroups conduct business and meet during and possibly outside of the full CPG meetings as needed.  This work is usually conducted through e-mail or phone conferences, but may occasionally include a meeting that requires travel.

Our challenge has always been getting broad community representation from all communities affected by HIV in Montana. I’m asking you to consider this opportunity- and/or passing it on to someone you think would make a good representative.

Please click on the application link below for more information. We’d love to have you!

CPG Application 2011              Application Deadline is January 16

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ADAP Watch 12/19/11

by D Gregory Smith

From NAPWA:

President Obama called for the end of AIDS on World AIDS Day. But achieving that in America requires more public sector funding than Congress has provided to date, and the political climate for more funding is brutal.

 

We could make a classic business Republican argument for more funds: the increases would be trivial in the context of a $3.5 trillion federal budget, and the rate of return on investment would be as high as it gets – reduced public sector health care costs in future years, and improved private sector productivity. It cost next to nothing (in context) this year, and it pays back big for years to come. 

 

With recent additional federal money, ADAP waiting list numbers have come down some over the past month, but more than 4,000 Americans are still on wait lists. Ninety percent of them are in four Southern states, Florida, Georgia, Louisiana, and Virginia. All four are having financial difficulties in this economy, but the millions of dollars they would have to spend to eliminate their waiting lists are insignificant in multibillion dollar budgets, and spending the millions or not will not make their difficult positions materially any worse or any better.

 

Here are the latest numbers from our friends at NASTAD:

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ADAP Waiting List for 12/15/11

by D Gregory Smith

The waiting list continues- up 59 persons in 2 weeks:

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AIDS Drug Assistance Program Numbers, 11/03/11

by D Gregory Smith

 

From The NAPWA Positive Voice Newsletter:

The waiting lists numbers keep coming down – a little. The federal government released $1.8 billion to support federal-state HIV partnerships, with $813 million earmarked specifically for ADAP programs with waiting lists.

The release of funds is slow, though, and the four states that account for almost the entire waiting list – Florida, Georgia, Virginia, and Louisiana – aren’t stepping up to the plate to match the additional federal money.

The waiting list states say they can’t afford it. We visited Florida’s ADAP debate in the October 24 Positive Voice. Let’s turn in this issue to Georgia.

Georgia Public Broadcasting reports the state’s waiting list numbers have fallen by about 300, from roughly 1,700 to 1,400, with $3 million in new federal funds. Eliminating the waiting list altogether, state officials say, would cost $15 million the state doesn’t have.

Time for a reality check….

Georgia’s proposed 2012 budget is $20 billion. The $15 million that would eliminate the waiting list amounts to 0.075% – less than one-tenth of one percent – of that budget. Even in a period of state financial stress, with an expected five percent deficit, the needed $15 million is so minuscule that spending it or not spending it to end the waiting list has no material impact on the state’s budget crisis. But Georgia’s political conversation continues to be dominated by proposals to lower higher-income and corporate tax rates and “pay” for the cuts by cutting services and shifting tax burdens to middle and lower-income Georgians.

Georgia’s $15 million we can’t is really a $15 million we don’t want to. And the future cost of this year’s $15 million we don’t want to will be a lot more than $15 million.

Here are the latest waiting list numbers from our friends at NASTAD:

Rehberg’s Ridiculous Healthcare Bill: Resurrecting Non-Science-Based Prevention Policies

by D Gregory Smith

Rehberg’s apparently not swayed by the people in his state affected by HIV. Nor is he swayed by science.

From The AIDS Institute:

 

“If ever passed, this spending bill would set back the progress we are making in preventing HIV and providing basic care and treatment for those who have HIV/AIDS in our country,” commented Carl Schmid, Deputy Executive Director of The AIDS Institute.

House Labor, HHS, Education and Related Agencies Appropriations Subcommittee Chairman Denny Rehberg (R-MT) introduced a fiscal year 2012 spending bill that guts many programs, including health reform, and resurrects non-science based prevention policies.

Most disappointing is how the bill would impede prevention. Rehberg’s bill would cut by nearly $33 million funding for the Centers for Disease Control and Prevention’s (CDC) National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. This is despite an estimated 50,000 new HIV infections each year and over 230,000 people unaware of their infection. The U.S. government invests only about 3 percent of its HIV funding in prevention. The lifetime cost of caring and treating one person with HIV is approximately $360,000. In order to help achieve the goals of the National HIV/AIDS Strategy to reduce the number of new infections and increase testing levels by 2015, the President has proposed an increase of $57 million for HIV prevention in FY12.

On top of cutting CDC’s budget, the bill would ban federal funding of syringe exchange programs, a scientifically proven method to prevent HIV and other infections while not increasing drug use, and would resurrect failed abstinence only until marriage programs. Additionally, the bill would decimate the Teen Pregnancy Prevention Program by cutting its budget from $105 million to $20 million, eliminate all Title X spending, which funds HIV testing programs for women, and the entire Prevention and Public Health Fund.

The House bill proposes to flat fund the entire Ryan White HIV/AIDS Program, which provides care and treatment to over 550,000 low-income people with HIV/AIDS. It fails to address the crisis in the Ryan White AIDS Drug Assistance Program (ADAP). There are currently over 8,500 people in nine states on ADAP waiting lists and over 445 people in six states who have been disenrolled from the program due to budget constraints and growing enrollment. The AIDS Institute and its partners have been advocating for an increase of at least $106 million. The President has requested a $55 million increase. In order to address the current wait list, an increase of approximately $98 million would be required.

Chairman Rehberg’s bill also prevents implementation of much of the Affordable Care Act, which once fully implemented, would both bring many people with HIV/AIDS into lifesaving care and treatment for the first time and help to prevent HIV.

The one bright spot in the bill is Rehberg’s proposal to increase medical research spending at the National Institutes of Health by $1 billion.

“While we realize we are living in very difficult fiscal times, this bill is not just about making difficult funding decisions, but about resurrecting many controversial policies that will never pass the Congress nor be signed by the President,” commented Michael Ruppal, Executive Director of The AIDS Institute. “As Congress finalizes its FY12 spending bill, The AIDS Institute will work with the House, Senate and the Administration to increase, rather than cut funding for prevention and adequately fund all parts of the Ryan White Program, including ADAP. Additionally, we will work to defeat all extreme policy riders.

The bill (HR 3070) has not been formally considered by the House Appropriations Subcommittee. The Senate Appropriations Committee already has passed its own version of the bill. Since Congress has not passed any spending measures, the government is currently operating under a short term continuing resolution.

This schmuck is completely unwilling to listen to facts- or to believe that HIV is in Montana, and it poses particular problems for his constituents. Maybe it’s time to educate him.

Call his office: (202) 225-3211

Another Reason To Start HIV Meds Early

by D Gregory Smith

From Science Daily:

Researchers at Weill Cornell Medical College and GHESKIO (Groupe Haitien d’Etude du Sarcome de Kaposi et des Infections Opportunistes) have shown that early treatment of HIV not only saves lives but is also cost-effective.

And the recommended blood levels of T-cells as markers to start treatment is creeping up:

Before 2009, the World Health Organization (WHO) recommended waiting to initiate antiretroviral therapy (ART) for HIV until a patient’s CD4+ T cells fall below 200 cells per cubic millimeter. But in that year, a randomized clinical trial completed by Weill Cornell researchers at the GHESKIO clinic in Port-au-Prince, Haiti, demonstrated that early ART decreased mortality by 75 percent in HIV-infected adults with a CD4 cell count between 200 and 350 cells/mm3. As a result, the WHO now recommends that ART is started in HIV-infected people when their CD4 cell count falls below 350 cells/mm3.

Full story here.