Friday, November 21, 2008

An opportunity to help others

The summit ended with a push to support a nine-point national advocacy plan for ``rapid scale-up of routine, voluntary testing,’’ which will be presented to advisers of President-elect Barack Obama.

Among the points: integrate HIV testing as part of a national health care reform plan; increase federal funding for testing for state health departments, federal agencies, community health centers, and corrections programs, among others; and encourage state Medicaid programs to cover routine HIV testing.

Christine Lubinski of the HIV Medicine Association, like many participants at the summit, said she had high hopes for an Obama administration. `` We will have a president who is actually very interested in the domestic epidemic and who might hear some of our recommendations,’’ she said. The HIV Medicine Association will be collecting signed copies of the action plan.

And David Ernesto Munar of the AIDS Foundation of Chicago said the call to action was a political and a personal issue for him.

``I’ve been living with HIV for 14 years,’’ he said. ``I was diagnosed at 24. I learned my status within six months of becoming infected. I believe very strongly that other people in similar situations deserve that same opportunity to get the help and support that they need.’’

A reverse brain drain

A big worry among those at the summit on Friday: Finding enough health workers, especially physicians, to work on the domestic HIV epidemic.

``Clinics are at capacity, if not beyond already; the provider mix is stretched; and not a lot of new docs are going into HIV care,’’ said Dr. Michael Saag of the University of Alabama.

Dr. John Bartlett, summit co-chair and professor of medicine at the Johns Hopkins University School of Medicine, said many Johns Hopkins medical students are enrolling to become AIDS physicians, but ``they all want to go into HIV careers in Africa. It’s a brain drain in the reverse direction. We have to do something to make it more attractive’’ to work on AIDS in the United States.

Dr. Judith Feinberg, of the American Academy of HIV Medicine, said the work domestically should be framed once again as fulfilling a huge, unmet need in the country. She remembered that feeling helped motivate her to care for AIDS patients at the beginning of the US epidemic. ``It allowed us to be humane again,’’ she said.

And Dr. Laura Cheever of the HIV/AIDS Bureau in the US Health Resources and Services Administration, also reminded the group that working in AIDS domestically ``used to be a cause.’’

``There are lots of calls for a domestic PEPFAR – although I’m not sure exactly what that means,’’ she said, referring to the US government’s global AIDS program. ``But a domestic PEPFAR could make HIV a cause again.’’

She echoed Bartlett: ``Right now,’’ Cheever said, ``young idealists are going into international HIV.’’

Treatment starting point

The summit wasn’t all about HIV testing, and several sessions on Friday tackled other pressing issues.

One was when to start testing someone who is infected. Dr. Veronica Miller, executive director of The Forum for Collaborative HIV Research, framed the issue for a panel of experts.

``A big question is why don’t we just put them on treatment right away? There is a lot of enthusiasm for that idea, but what evidence will that policy be based on?'' she said.

Two panel members discussed clinical trials still in their relative infancy, while a third gave a cost-effectiveness perspective. AIDS physicians now routinely start anti-retroviral (ARVs) treatment for patients whose CD4 count falls below 350. But some are wondering whether the CDC should recommend starting ARVs at a CD4 count of 500, or perhaps soon after a person is tested positive – regardless of their CD4 count. Critics of those ideas worry that long-term toxicity issues are unknown, and whether patients will develop resistances at higher rates.

Dr. Rochelle Walensky, a Harvard University expert on cost effectiveness in health, said that clinical trials might pinpoint the true incremental benefits, and the benefits in further limiting transmission because of the early treatment. But she said that must be balanced against cost.

``If it takes three years to go from (a CD4 count) of 500 to 350, that’s $50,000 in drug costs right there,’’ she said. ``So we have dollars-per-person-in-life-year gained. Next question: Is it cost effective? Are resources limited? If so, what are we willing to pay for?’’

She raised a couple of comparisons: an estimated $5,000 to $10,000 to find each person newly infected with HIV; the costs of taking people off waking lists for ARVs; costs on treating hepatitis C, now one of the leading killers for people with full-blown AIDS.

``I don’t know the answer when to start treatment for HIV,’’ she said. ``But I think we should talk about what are the costs, and what are we going to get from it.’’

`Move this movement to the moment’

Marsha Martin, executive director for Get Screened Oakland, believed those at the summit needed to know of the laws recently passed in California. She ticked off three:

• AB682: Changes testing from opt-in (patient had to give approval up-front) to opt-out (provider would give the test unless the patient objected) and removed the requirement of written informed consent before an HIV test;
• AB1894: Requires any insurer to cover the costs of HIV testing in medical and health care settings;
• AB 2899: Streamlines in testing centers the process of counseling and testing for repeat testers.

Martin said it was important to know the California developments – as well as those in other states – because advocates and HIV experts should be on the same page as they focus on next steps.

``We are moving this along,’’ she said. ``We have to take the HIV movement and move it to this moment. … We will not be able to scale up routine HIV screening without strong advocacy at this moment.’’

Who pays?

Carl Schmid, director of federal affairs for The AIDS Institute, based in Washington, D.C., told the summit Friday many people argued that informed written consent was the largest barrier to scaling up HIV testing.

He begged to differ: Funding, he said, would prove to be much more critical.

``If we are really going to have a profound effect in promoting change in HIV testing in the United States in all health care settings, we are going to have a systematic change in the ways HIV testing is paid for,’’ Schmid said.

He said that since the CDC goal is to test all Americans aged 13 to 64 who comes into a health care setting, advocates should not just look at traditional sources for HIV funding – but expand their thinking toward any kind of health care funding.

Schmid said one goal would be to enact legislation requiring that private insurers cover routine HIV tests. But he said that doesn’t even happen with the federal government’s health care insurance plan. ``You would think the federal government would lead by example – you would think that their medical health plan would include coverage of routine HIV testing -- but they don’t,’’ he said.

Decline in risky behavior

What happens to a person’s sexual behavior after they are diagnosed with HIV? Gary Marks of the Centers of Disease Control and Prevention’s Division of HIV/AIDS Prevention presented data that showed a substantial decline in risky behavior.

He presented one study that found 39 percent of men having sex with men (MSM) had anal or insertive unprotected sex in the six months prior to learning their status. But in the six to 12 months after the diagnosis, just 16 percent of the men had unsafe sex – a 59 percent reduction.

Or put another way: 84 percent did not engage in risky behaviors.

Marks said that data -- coupled with an earlier national study that estimated 54 percent of the new infections in the United States involved transmission with HIV-positive people who did not know their status – represented more proof to aggressively ramp up HIV testing around the country.

Speaking about the sexual behavior of those who learn they are HIV positive, Marks said, ``We’re not seeing a relapse into unsafe sex here. … My tentative conclusion is that their behavior change after learning they are HIV positive seems to be enduring.’’

Thursday, November 20, 2008

Dealing with children and HIV

From one of the side sessions -- ``Workforce Needs and Challenges in Delivery of HIV Care’’ – came these thoughts about children and HIV:

A male doctor: “There are large numbers of parents treating their children, but not telling their kids the reason, not telling them what they are being treated for. After age 13 their doctor can tell them.”

A female doctor: “Their doctor has an ethical responsibility to tell them. We have a policy: When HIV positive children turn 10, we ask their parents to sign a letter. It says that if you don’t tell them by age 13, we will. We’ve lost patients, but we have to do it. All the data shows that the earlier you tell, the better the patient does.”

A young man: ``We should tell them younger. My mother is an elementary school teacher in Detroit. She teaches in a school that goes up to grade five. She tells me weekly stories of students being sexually active.’’

--Guest post, Bee Wuethrich

How to find the 21 percent?

The CDC estimates that 21 percent of Americans infected with HIV don’t know it.

So the obvious question is how to find them.

Since 53 percent of those newly infected in the United States are males having sex with men (MSM), one AIDS expert asked at a summit side session, shouldn’t groups mostly target the MSM community?

Well, that's not so simple, said one panelist.

In South Carolina, said Dr. Wayne Duffus, an AIDS doctor, not too many men will identify themselves as MSMs.

``In the South, working in a STD clinic, 120 percent of the people are heterosexual,’’ he said, prompting laughter in the audience. ``They just don’t tell you (that they are MSM). .. If we say, we are going to find MSM, it’s going to be a tall order -- particularly in rural communities.’’

Starting testing from scratch

When Dr. Wayne Duffus, an AIDS doctor who also works for South Carolina’s Department of Health and Environmental Control, went around to several hospital emergency rooms a few years ago, he was shocked.

Not one, he said, offered HIV tests.

``They actually refused to do any testing at all,’’ Duffus said at a side session at the summit. ``I believe in the goodness of people, and believe most bad decisions are based on lack of education. And there are limitations on funding.’’

Now several emergency rooms offer HIV tests, he said. `` The tide is slowly changing,’’ he said.

Are you afraid to talk about sex?

One of the recurrent themes at the summit is that those in the health care profession still are not talking to their patients enough about safe sex.

Dr. Michael A. Horberg, a research scientist at the Division of Research at Kaiser Permanente Northern California, told one side session that the ``biggest impediment of physicians testing patients (for HIV) is a certain discomfort about talking about sexual issues. This is true especially if patients are older than the doctor.’’

He then put it more bluntly: ``No one wants to talk about granny getting it on.’’

Delay on VA's HIV testing change

Even though the CDC advocated routine HIV testing for every person in America between the ages of 13 and 64 two years ago, the Veterans Administration until recently was prohibited by federal law from routine widespread testing.

That law was repealed last month, but the VA – the largest civilian health care organization in the country – still needs to change its internal regulations to implement the law. That is now under review before the Bush administration's Office of Management and Budget (OMB).

OMB officials have told the VA that it may require a ``comment’’ period before implementation – a process that could take months, according to Dr. David Ross, VA’s director of clinicial public health programs. Ross said the VA hopes to avoid the drawn-out process, and would like to start routine testing as soon as possible.

Speaking at one of the side sessions at the summit, Ross said, ``Over 22,000 veterans are infected with HIV, and we’re still grappling with the fact that a lot of veterans out there are HIV positive and have not been diagnosed.’’

The VA has 5 million beneficiaries. The number tested for HIV last year: 100,000.

``We’ve got a long ways to go, but we are very committed to doing this,’’ Ross said, referring to expanding HIV testing for veterans.

Wanted: Real conversations about HIV

At one of the breakout sessions – titled ``Addressing Policy Changes: Lessons Learned'' – a senior US government official on HIV policy said that all the talk here about HIV testing was important, but he believed something more important needed to happen first:

People need to talk more openly about HIV across the United States – and that includes behavior that leads to infections, said Christopher Bates, director of the Office of HIV/AIDS Policy for the US Department of Health and Human Services.

``When I travel across the country, I still meet people who have never had a conversation with someone about HIV,’’ he said. ``…We have not had real conversations in public forums in America about it. We didn’t take advantage in this country when a major leader was having sexual activities to talk about HIV, or when a famous minister got a young woman pregnant. We let that opportunity go.’’

Bates said the advocates should ``start at the real ground zero -- have the conversation about sexual engagement and substance abuse, including alcohol, that (leads people) to being infected.’’

He said much needed to change. Two examples:

`` Black gay men in particular have not had themselves embraced appropriately so we wouldn’t have at least half of all new infections coming from this community.’’

And: `` Truth is, we still have doctors who don’t want to talk about HIV. We still have nurses who don’t want to talk about HIV. … There are people in our clinical environments who are homophobic, who don’t want to work with substance abusers.’’

But he did note one ray of hope for him. He talked about President-elect Barack Obama.

``I’m very glad we have an incoming president who wants to talk about a national AIDS plan,’’ Bates said. ``It will allow us to put some elements forward that have been on the back burner.’’

New York, New York

At the conference, it seems that every third person is from New York City, making this list easy to compile:

* Percentage of US HIV-positive population in New York City: 13 percent
* Number of states requiring written consent forms prior to giving an HIV test: 9 (including New York.)
* Number of languages on written consent forms in New York City: 20
* Number of languages spoken in New York City: at least 80.

African lessons

One theme that keeps coming back at the conference: What lessons can be learned from the fight against AIDS in Africa?.

Shannon Hader, senior deputy director of the HIV/AIDS Administration at the District of Columbia Department of Health, had previously worked for the CDC in Harare, Zimbabwe. In Zimbabwe, she worked for PEPFAR – the US global AIDS program.

``The major lessons from PEPFAR is we can heighten our expectations and go on to achieve great things,’’ she said. Even with all of Zimbabwe’s huge problems – widespread human rights abuses and the world’s highest rate of inflation (by far), to name two – she noted that Zimbabwe has lowered HIV prevalence from 24 percent to 17 percent in the last five years.

When Hader interviewed for her job, Mayor Adrian Fenty asked her what she would do. Hader said she would set higher goals, even though an energized DC testing program had done 45,000 tests in 2006. In her meeting, she compared DC (population 600,000) with Botswana (1.6 million people). While DC tested 45,000 people in 2006, Botswana tested 450,000, she told him.

One of Botswana’s advantages: a national policy for opt-out testing in hospitals, meaning that an HIV test will be administered to all incoming patients unless the patient says no. In the U.S., opt-out testing remains a rarity.

Donna Futterman, director of adolescent AIDS program, at the Montefiore Medical Center in New York, who also is an AIDS researcher in South Africa, said AIDS experts here could learn much from Africans.

``It probably doesn’t need to be said, but when we think of doing international work, a lot of us think what we need to share,’’ she said. Those who work in Africa on AIDS, she said, ``bring back as much in the concept of what needs to be done, as what we bring. We are not just helping others. We are learning from the rest of the world.’’

Disclosing to my `Sarah Palin Republican neighbors’

Jesse Milan Jr., vice president and director of community health systems at Altarum in Washington, D.C., is HIV positive. He said that Americans must get to know HIV positive people – not just learn the numbers put out by the CDC.

``I just came out as a person living with HIV with my Sarah Palin Republican neighbors,’’ he said. ``Now, to them, there is a face behind the numbers. And I have to tell you, my Sarah Palin Republican neighbors cannot stop hugging me.’’

He called on the media to tell the stories of people in difficult situations. ``What’s it like to be that woman who can’t get to her HIV appointment today because she doesn’t have bus fare, or child care? Maybe we should try to find that woman who was beaten last night because she asked her man to put on a condom. What about that emotionally scarred woman, what would have happened to her if she were to ask her man, `Where was he last night?' ’’

He continued, ``Who are those 21 percent of Americans who do not know their status? Many may be afraid that if they learned their status, they might not be able to eat off grandma’s china next week for Thanksgiving.’’

Milan also took aim at national policymakers for not developing a national HIV strategy.

``Had routine testing been a part of a national plan, we might have had coordinated strategy and goals. But a national plan doesn’t exist in this country. There has been a plan for PEPFAR (the US global AIDS program) which has mandated that those countries it gives funding to must have a national plan. Their goals have been met in the first five years of PEPFAR. But do we have a goal of how many people should know their status through routine testing? No, we don’t. When we connect something to a goal we ensure strategies to ensure its success.’’

Call to action

Donna Futterman, director of adolescent AIDS program, at the Montefiore Medical Center in New York, didn’t waste much time in pinpointing problems with HIV testing in America.

The successes, she said, were all pilot projects.

``How do we move forward to make HIV testing available for everyone?’’ she said. ``… We’re still in the phase of pilots. It’s one hospital here, or a city may have a few emergency departments that offer routine testing, but we’ve learned a lot from the pilots on the steps that need to happen to scale up.’’

She continued with a challenge to those running health systems: ``Listen, folks. HIV is a disease. A HIV test is a test, and who is more responsible than fighting HIV that the medical sector. It is our duty and we must mobilize to make it happen.’’

Overview of US epidemic

Two senior CDC officials in charge of domestic HIV issues gave sweeping overviews of the epidemic. While they summarized what was reported earlier this year at the International AIDS Conference in Mexico City, they also pinpointed little-reported developments in both new HIV infections and testing initiatives.

Kevin Fenton, director of the National Center For HIV/AIDS at the CDC, said that of the estimated 56,300 new HIV infections in 2006, 53 percent were among men having sex with men (MSM). Then he drilled deeper into those statistics: Among white MSM, 35 percent were aged 30 to 39; among black MSM, 52 percent were aged 13 to 29; and among Hispanic MSM, 43 percent were aged 13 to 29.

``There are urgent threats and urgent realities,’’ Fenton said. ``… MSMs of all races remain at increased HIV risk, and HIV incidence in young MSMs is of particular concern among blacks and Hispanics.’’

Bernard Branson, another senior CDC official, spoke about the national initiatives to expand HIV testing. He pointed out a few successes: the numbers of people unaware of their HIV infection dropped to 21 percent in 2006, from 25 percent the year before; 22 percent of African Americans said they were tested in 2006, compared to 19 percent in 2002; the Veterans Administration repealed a regulation that prohibited widespread HIV testing; and 11 states in the last two years have removed requirements that people must sign informed consent forms before getting tested.

Branson also said noted two successes – one in New York, the other in Florida.

The New York Health and Hospitals Corporation, which has 4.9 million annual patient visits, testing has nearly tripled in three years. In fiscal year 2005, the system tested 58,785 patients; in fiscal year 2008, more than 160,900 were tested.

In Florida, which initiated HIV rapid tests in many settings, he noted that 2.4 percent of those tested in medical settings were HIV positive – and of those testing positive, 93 percent did not know that beforehand. He said that those testing positive in jails in Florida, 77 percent did not know they were infected.

But Branson also acknowledged that much needs to be done. ``Our strategies have not reached new populations’’ infected with high rates of HIV, he said. ``We haven’t been completely successful.’’

First applause

The first applause at the summit: When Mayer showed a slide of President-elect Barack Obama on the The Economist’s most recent cover.

Second applause: When Mayer said, ``It’s very exciting that things will be evidence-based now.’’ Later, in a quick interview, he said he was referring how, during the Bush administration, ``ideology bleeds into’’ many decisions regarding health care, including policies that fund abstinence programs and restrict funds for family planning.

Conference goals

Welcome to a blog that will cover the 2008 National Summit on HIV Diagnosis, Prevention and Access to Care, held for two days in Arlington, Va.

Dr. Veronica Miller, executive director of the Forum for Collaborative HIV Research, the conference organizer, first defined the goals of the meeting.

She said she wanted to give an update on the current status of the HIV epidemic in the United States; review what has been learned in the last two years; determine how to build on those lessons; and then to set goals for the next two years.

Dr. John Bartlett, professor of medicine at Johns Hopkins University School of Medicine, a medical doctor and one of the co-chairs of the summit, said one thing pained him in particular: ``We are finding patients too late in the disease – it’s a problem in the US and a problem globally. We need to keep treating patients earlier. They keep coming to us too late.’’

He extolled the benefits of rapid HIV testing and noted that some progress has been made following the Centers for Disease Control and Prevention’s call two years ago for routine HIV testing among all Americans aged 13 to 64.

Still, said his fellow co-chair, Dr. Kenneth Mayer, director of Brown University AIDS Program, and also a medical doctor, far too little has been done in focusing efforts to increase HIV prevention, including testing, in the areas that need it the most.

``There is evidence of recent infection clusters --populations that are most severely affected but are unlikely to be aware of’’ of the HIV epidemic. He said in some cases, public health officials should aim their efforts on a ``block to block’’ scale in urban areas in order to more accurately target prevention efforts.

Tuesday, November 18, 2008

The benefits to testing early

By John Donnelly

Deadra Lawson-Smith, 46, learned she was HIV positive at 26. To her, there’s no secret why she still feels so strong and healthy.

``I attribute a lot of that to early testing,’’ she says. ``I think when I was made aware that I needed to be tested, back then, 20 years ago, it felt like a negative thing. But it really was a positive thing. It gave me an opportunity to be monitored. It gave me an opportunity to work through the emotional things that are going to prevent you from accessing care. You really do have to work through the emotional part of it.’’

Lawson-Smith, who lives in Columbia, S.C., works as a community liaison and peer advocate for Project F.A.I.T.H., an initiative run by the South Carolina HIV/AIDS Council. She plans to attend the 2008 National Summit on HIV Diagnosis, Prevention and Access to Care in Arlington as a member of the Living Quilt project, a group of HIV-positive women in the South who decided to go public with their status in order to break stigma and fear around the disease.

Her message on early testing is especially poignant for her adopted state: In South Carolina from 2001 to 2005, nearly two of every five women (37.7 percent) diagnosed with HIV tested late -- meaning they were diagnosed with AIDS less than one year after testing positive for HIV.

Lawson-Smith, the mother of four and the grandmother of four more, said she has seen too many people go for tests too late.

``I’ve seen people get sick and die real quick,’’ she said. ``Being diagnosed as positive almost as long as this epidemic has been around, has made me privy to a lot of that. There are a lot of people suffering in their silence.’’

For her, the Living Quilt project has been powerful. She’s now part of a digital collection of women who are telling their stories publicly without hesitation.

``I’m really grateful I have the ability to speak up,’’ Lawson-Smith said. ``That’s where the freedom comes from. The freedom comes from disclosure.’’

Monday, November 17, 2008

The reason to test

Christopher Barnhill of Metro TeenAIDS talks about how he discovered he was HIV positive, and the importance for everyone to get tested. Barnhill will be attending the conference.