Barriers to Care

Bob LaMendola writes for the South Florida Sun-Sentinel regarding barriers to care for HIV-positive black women in the region. The list of barriers pretty much fits everyone else everywhere else, no?

The stigma: Many women avoided doctors, public clinics and programs because they didn't want family or friends to know they were infected.

Red tape: HIV/AIDS programs often require long and intrusive forms, and send women from office to office to get services. Many women had no idea where, in a jumble of agencies, to find help.

. . .

Putting family first: Some women reported having no time for medical care because they were too busy earning money and taking care of their families.

Denial: Some women insisted they were misdiagnosed or felt fine.

Misconceptions and mistrust: Some thought that being infected meant they were only carriers, not sick. Others, including many Caribbean immigrants, rely solely on folk remedies or religion.

Inadequate access: Hurdles to health care include a scarcity of local doctors, long waits at clinics and a lack of public transportation and day care.

Lax followup: Doctors, clinics and emergency rooms struggle to make sure patients keep taking medicine. No agency takes charge.

Giving up: Some infected drug users and prostitutes don't bother seeking treatment because they are ashamed about their history. Others assume HIV equals death.

. . .

Other obstacles found by the study: Some programs do not provide care unless patients are drug free, some patients suffer debilitating side effects from meds and some report disrespectful treatment by assistants at clinics and doctors'
offices.

Some of these barriers can be torn down with more intensive education of both clients and providers. Building some trust would help out a bit, too. But the red tape and the clear evidence of lack of funding needs more attention at the higher levels of planning and policy. We could stand some of that in Texas, too, I'd say.

Crystal Meth-->Hypersexuality-->HIV

Uh huh.

HIV and Viacom

Viacom is in the midst of a three-year program in partnership with the Kaiser Family Foundation to increase HIV awareness through Viacom's various media outlets, including: CBS and UPN; cable networks MTV, BET, VH1, CMT: Country Music Television, TV Land, Nick at Nite, Showtime, Spike TV and Comedy Central; and 183 Infinity Broadcasting radio stations in the top 50 markets. An Associated Press report published on ABCnews (a Disney outlet), says:

. . . Kelli Lawson, executive vice president of corporate marketing for BET, says Viacom's outreach efforts are effecting change.

In a survey of blacks conducted by Kaiser last August, among 18-to-24-year-olds exposed to Viacom's campaign, half said they had discussed safe sex practices with their partner because of the Viacom campaign.

And nearly 77 percent of that group who were sexually active said they were more likely to use a condom because of the campaign.

Maybe Disney will now take up the challenge?

Spongeworthy

Contraceptive Sponge to Return to Market

Linda A. Johnson, writing for the Associated Press, reports that the contraceptive sponge is about to return to the U.S. market after a ten-year hiatus. The sponge is one of the older forms of birth control used by women and, while not as effective as some other means now available, preferred by many because of comfort and convenience.

While this would be good news for many women, a word of caution applies: This device will not prevent the transmission of sexually transmitted diseases.

Waiting Lists for ADAPs

Perhaps I spoke too soon when I complained about the trickle of "new news" regarding HIV and AIDS in the U.S. Reuters has a story out today about the waiting lists for some state ADAP programs thanks to a new study (PDF) released by the Kaiser Family Foundation. The Reuters report is, however, much truncated from the much more informative press release issued by the Foundation about the study.

Texas is shown in the report as providing "all approved ARV's in all four drug classes, NRTIs, NNRTIs, PIs, and Fuseon Inhibitor" but "[less than] 10 'AI' drugs recommended for the prevention of OIs." The PowerPoint presentation for the report does not show that Texas has a waiting list for the Fuseon Inhibitor, and that number (now about 36) is not apparently included in the total number of persons counted as being on waiting lists for ADAPs. Texas is listed as one of the states with cost containment measures in place and anticipation of additional measures needed in FY 2005.

KFF also provides a brief fact sheet (PDF) on the issue (with some clue about all those acronyms I threw out above).

Catching up on some links

Blogger is giving me fits today, but I will make a stab at getting another post out. [crossing fingers]

Here are some links that may be helpful in getting a broader perspective on HIV/AIDS issues:

Texas AIDS Health Fraud Information Network--This is a task force that Texas AIDS Network has participated in since 1982. Indeed, Texas AIDS Network helped found it. The task force provides information for consumers and providers regarding fraudulent treatments, devices, and information related to HIV/AIDS. The web site includes news, fact sheets, downloadable brochures, and tips on what to look for when considering alternative and complementary therapies. There's no agenda to discourage CAM, just some help for the cautious consumer, because there are some products that are harmful to people living with HIV and, of course, some outright fraud. There are, by the way, similar task forces in other states.

AIDS Combat Zone--Brad Biggers left a nice comment and then linked to Texas AIDS Blog. After visiting his site, I see that there is a nice round up of news stories there, many of which we don't cover here, e.g., international news, since our focus is pretty much limited to Texas and things that matter to Texans living with HIV (at least, we hope so!). Brad's done a lot of work on his site to gather useful reference links.

Respectful of Otters--This one is an old favorite. When someone gives their tagline as--"I'm a psychologist working in HIV research and treatment in the inner city. Don't talk to me about 'compassionate conservatism'"--I have to look twice. Ms. "Otter," who has just given birth to a new "Otter pup" named Alexandra (congratulations!), writes on an eclectic mix of health issues and Canadian and U.S. politics. There are occasional HIV-related stories on her site, but you do have to hunt for them. The title, by the way, comes from a student typo: "Psychologists have a duty to be fair and respectful of otters." Somehow I think we all share that duty. ;)

Oy!

Expensive drugs, sick patients, bribery--not a good mix. Even worse that it comes along at the same time that there are investigations of embezzlement at a Florida ASO.

I hope that's the end of it.

Scanning the news for stories about AIDS brings mostly stories about the epidemic overseas. There are occasional stories that pop up about a large fundraiser somewhere. Sometimes there's a press story about the allocation of Ryan White funds in a particular area. Of course, there is a slow but steady stream of reports about this or that stage in the progress of drug research.

AIDS is, however, mostly old news in the U.S. It takes a scandal of some sort to really get press attention. The Florida story has been showing up for several days now in various news reports. Then along comes the Serono story. All we need is for enterprising reporters to start looking for more dirt to lose what little focus there is on the needs of people living with HIV and AIDS in this country.

If that sounds like I'm missing the point that both of these stories are about criminal behavior, I'm not. But I'm just as upset about the fact that these folks had to practice their criminal behavior on AIDS. If they had been bribing docs to prescribe some cancer medication or embezzling funds from a diabetes organization, the impact on patients would be less hurtful.

HIV is already a "scandalous" disease. Anytime we go to the Texas Legislature to ask for more funds for HIV, there's always some legislator who wants to bring up "responsibility." There was a bit of a struggle in the Senate Finance Committee that included a hint of that issue. We have made it (so far so good) through both the House and the Senate now with our request for $15 million in new funds for HIV--and only have to watch out for the Conference Committee and the Governor's line item veto. We don't need any additional stories to feed the "scandal beast" and give anyone any ideas about cutting that funding.

So, I'm just saying, I hope that's the end of it.

HPV Vaccine

Via Atrios and The Light of Reason.

I am apparently a bit behind on this news: GlaxoSmithKline and Merck have both developed new vaccines to prevent human papilloma virus, a cause of cervical cancer, which in turn is a significant risk for women with HIV. Earlier reports on these vaccines were available last November. Current reports are now addressing some of the difficulties of getting social acceptance of the vaccines and of licensure for production in other countries.

Tell me again why a parent would put a child in a car without a seatbelt?

Nonoxynol-9 Warning Labels--Not Yet

The Government Accountability Office (GAO) has released a new report about nonoxynol-9 (N-9) and the prevention of HIV: HHS: Efforts to Research and Inform the Public about Nonoxynol-9 and HIV (March 2005). The report's Concluding Observations are:

CDC’s and NIH’s efforts to research N-9’s potential use as a microbicide ended in 2000, when the preliminary results of a major clinical trial indicated that N-9 may actually increase the risk of contracting HIV. CDC has warned that N-9 may increase the risk of HIV transmission when used frequently, and some manufacturers of N-9 condoms have taken steps to either add their own warning labels or remove their N-9 condoms from the market, while other manufacturers have not taken such steps. FDA has proposed requiring new warning labels that indicate that N-9 vaginal contraceptive products do not protect against HIV or other STDs and that frequent use, such as more than once a day, may increase the risk of contracting HIV. FDA is also developing proposed warning labels for N-9 condoms. While FDA expects to issue the final rule for the new warning labels for vaginal contraceptive products by September 2005, it has not yet issued proposed warning labels for N-9 condoms, and it has not indicated a target date to issue the final warning labels for N-9 condoms. Since FDA is still in the process of completing warning label changes for N-9 vaginal contraceptive products and condoms, the public may be left in doubt about the appropriate uses of these products until FDA finalizes these warnings. Further, the public may be at risk if the products are used inappropriately.

There are any number of snarky comments that come to mind in response to this report, but I will forego them in order to point out that there needs to be a tad more haste in the slow progress of government processes when it comes to warning labels. My recollection is that repeated use of N-9 irritates mucous membranes and makes it easier for the virus to enter the bloodstream. Even if my recollection is off in terms of the exact problem, I'm still thinking we heard all of this several years ago. If folks are using out of date information for prevention messages ("Use latex condoms with N-9" used to be the recommendation), the delay in providing warning labels is inexcusable.

Disinformation.gov

The American Prospect's online article is captioned "Misleading.gov," but there may be a more proactive element to the inaccuracy of information that is now being published on the new website being promoted by the U.S. Department of Health and Human Services--www.4parents.gov--which is why I'm going with disinformation. TAP does a nice job of pointing out some of the inaccuracies and gaps in information regarding condoms that are published on the site as well as pointing out some of the consequences of those inaccuracies.

So here's a thought. Seatbelts neither promote nor prevent accidents. They just protect you when you have one. Why wouldn't you tell your kids to wear their seatbelts when they get in a car?

The War on Condoms continues apace.

I'm Back

My father-in-law passed away last week, and we spent most of the week making arrangements and traveling to the funeral. I will be catching up on blog posts as rapidly as I can.