Thursday, December 21, 2006
The discussion in Africa now is whether to promote male circumcision and even whether to make it mandatory. Tanzania, for example, is considering whether to implement "mass circumcision" for its male citizens.
This raises the question: should this policy be discussed in Texas?
It's not happening here. Not that I don't want to shift to the new Blogger. After having panned it as inadequate for our needs, I am now eager to make the shift. For one thing, the new Blogger works better for email subscriptions. For another, it turns out that I like the categorization option. (I have secretly been playing with the new Blogger for, well, fun.)
So. I've backed up the template. I'm all ready to rework the sidebar. I'm eager to add some new subscribers. But it's not happening.
So. I'm linking to the article where the Blogger folks say it's gonna happen, so they can see (a) the link and (b) that I want to shift the blog! Sooner rather than later, guys.
Tuesday, December 19, 2006
As promised, I have now published my presentation on the Texas AIDS Network website as a PDF file. I used my version of "beyond bullets" to create my presentation in PowerPoint, using graphics and very few words on my slides, but writing extensive commentary in the notes. While the "notes" are not a script of what I had to say in the briefing, they do give the flavor of what we talked about.
My thanks to all who attended the session. I look forward to working with you in the coming months.
Tuesday, December 12, 2006
More information from the Health and Human Services Commission is available here.
Tuesday, November 28, 2006
Regarding Slide 27 (above), his Notes page said:
DSHS also administers programs to prevent the spread of HIV. Treatment has improved dramatically. As it does, the number of Texans with HIV grows. People are living longer with HIV--but we must also remember that they are working, paying taxes, and leading healthier, more productive lives.
Regarding Slide 28 (above), his Notes page said:
Clients of our HIV medications program are living longer as well. Again, the medications allow these Texans to live fuller, more productive lives and to contribute to the economy. Unfortunately, the cost of the medications used in this program has also grown--by 33% per client since 2000.
This is somewhat old news. However, the new news is that the whole question of an Exceptional Item for HIV in the Department's LAR is now somewhat up in the air. Discussion at the November 17 meeting of the HIV Medication Advisory Committee revealed that, while the estimates for potential funding needs for FY 2008-2009 continue to be based on a shifting foundation, the latest shift in the sands of this foundation suggest that the amount of funding needed will be substantially less that earlier proposed. Indeed, the amount may be sufficiently low that no Exceptional Item request will be made for HIV medications at all--with any amount needed being taken from other programs or resources at DSHS.Huh?
The questions that next come to mind are: If that happens, what will happen to the funds that were targeted for prevention, services, and surveillance? Will they just disappear also? If they continue to be included in the LAR, do they stand a chance of approval without the added "muscle" of a request for medication funds?
To begin looking for answers to those questions I returned to the Commissioner's presentation to see what he was saying before these questions arose. Oh dear! It looks like HIV prevention, services, and surveillance weren't even part of his spiel. He made nice "Republican" arguments about "productive lives," but he didn't make the connection between the need to increase prevention so that the upward curve of people living with HIV could be straightened out, if not reversed. It looks like we'll have to make the connection for him.
Chisum's bill reverses the current opt-out provision for sexuality education in Texas' public schools to make it opt-in. Whereas parents currently have the option of removing their children from sexuality education if that is their desire, now all parents must specifically sign their children up for this education.
Here are some tidbits from the Annenberg National Health Communication Survey, published in the November issue of the Journal of Pediatrics & Adolescent Medicine (and included in a report on Medscape):
- The survey was conducted by the Annenberg National Health Communication Survey, a nationally representative measurement of people older than the age of 18 years in the United States. Surveys were conducted by landline telephones between 2005 and 2006.
- Researchers inquired about respondents feelings about 3 different school-based sex education programs: abstinence only, abstinence plus information regarding contraception and prevention of STIs (comprehensive sex education), and comprehensive sex education plus instruction on the use of condoms. Subjects' responses were placed in reference to their self-described political ideology and rates of attendance of religious services.
- 1096 respondents provided study data. The mean age of participants was 46.8 years, and 78.7% of subjects were white. Rates of self-identification as conservative, moderate, or liberal were 35.5%, 39.5%, and 25%, respectively. There was a fairly even distribution across different frequencies of attendance at religious services, with 20.4% reporting no attendance and 21.4% reporting attendance once a week.
- Overall rates of support for comprehensive sex education, comprehensive sex education plus teaching condom use, and abstinence-only education were 82%, 68%, and 36%, respectively. Half of respondents opposed abstinence-only education, making it the most opposed educational option.
- Only 39% of respondents felt that abstinence was an effective means to prevent unplanned pregnancies. However, 80.4% of subjects felt that comprehensive sex education could reduce unintended pregnancies. Most participants disagreed that teaching teenagers to use condoms would encourage them to have sex. Women tended to have higher rates of opposition to abstinence-only programs compared with men.
- More liberal political ideology was associated with greater preference for comprehensive sex education. Rates of support for such programs were 70.0%, 86.4%, and 91.6% among participants with conservative, moderate, and liberal political philosophies, respectively.
- Comprehensive sex education and condom instruction received strong support from respondents who attended religious services a few times a year or less frequently. While abstinence-only programs received more support among subjects who attended church more often, there was equal support for abstinence-only and comprehensive sex education programs among the subgroup of participants who attended services more than once per week.
So what's the problem, Warren? Could this be a solution in search of a problem?
Monday, November 20, 2006
- HIV/STD: Bills on this list specifically address HIV/AIDS or other sexually transmitted diseases. The Network may take a position for or against these bills, may actively support or oppose them through testimony or other means, and may request the Texas HIV/AIDS community to do the same. The Network will also write bill analyses that relate them to the Network's policy principles.
- Related: Bills on this list have the potential to affect HIV/AIDS prevention, treatment, or care even though they do not specifically reference HIV/AIDS or sexually transmitted disease. The Network may take a position for or against these bills, may support or oppose them in hearings, but may not invest significant resources in doing so. The Network will track the progress of these bills and look for changes that may have an effect, either positive or negative, on prevention, treatment, or care.
- Of Interest: Bills on this list have the potential to affect the context, such as the social or overall health care environment, in which HIV/AIDS prevention, treatment, or care occur. The Network will review these bills for negative or positive impact and take action as resources are available. In most cases, the Network will simply monitor their progress through the legislative process.
Bills may be moved from one list to another depending upon Network resources and the degree to which they may be expected to have an effect on HIV/AIDS prevention, treatment, and care.
You can find a list of the prefiled bills at the Capitol website. Click the link for reports. Make sure that the box for Legislature says "80R - 2007." There are a number of ways to search for bills, including author, subject, and filing date. If you choose filing date, start with November 13 to see bills pre-filed from the beginning--and select every week day thereafter to see all of the bills.
If you want to follow any bills during the session, you can create a "My TLO" account and set up your own tracking lists. I am setting up online tracking lists for Texas AIDS Network using Google Docs & Spreadsheets. You can, if you want to, follow what I'm following by checking the Texas AIDS Network 2007 Bill Track.
Friday, November 10, 2006
Until then, however, I'm busily working away on those lists. A couple of points related to the lists arise.
- For Texas House and Senate members, I will eventually list the room number for their offices at the capitol. This room number is not needed for sending mail to them but rather will matter only if you plan to come to Austin for a legislative visit. I have started adding this room number for re-elected incumbents (new legislators won't have an office until later on), but it should not be "trusted" come January and the new legislative session. After every general election, Texas legislators play a sort of "fruit basket turn over" game with offices at the capitol. As "good" offices are vacated by retiring (or defeated) members, others scramble to take over their office space. This means that a lot of legislators will be moving around in the next few weeks--and, of course, that room number will change. Phone numbers will mostly stay the same, but some fax numbers will also change. I will make these "corrections" as the information becomes available.
- Email addresses should be pretty standard for most state legislators. The pattern is (firstname).(lastname)
@house(or senate).state.tx.us. The problem is with that first name, since many legislators have nicknames. Sometimes they use the nickname for their email, sometimes not. Robby Cook, for example, uses his nickname for most purposes, but his email is robert.cook. As my good friend, Gollum, would say: "Tricksy!" If you want to send email to your representative before the list is completed, there are two possibilities. One, take a chance on your legislator following the pattern for creating an email address without any variation. Two, go to the legislator's official web site to send a message via the online email form. To do the latter, start at www.house.state.tx.us or www.senate.state.tx.us to find those official web pages.
Thursday, November 09, 2006
Once again, volunteers are invited to collaborate on completing these data sheets. While data entry can sometimes be mindnumbing, there is some excitement in chasing down the information. Fax numbers in particular are somewhat elusive as are personal or campaign web sites. Just send an email to cparker AT texasaids DOT net, and I'll sign you up as a collaborator (and be eternally grateful for the help).
Wednesday, November 08, 2006
Detailed election results for state- and federal-level races are available from the Secretary of State.
In preparation for new congressional and legislative sessions, I have begun compiling contact information for our various representatives. I will be using Google Docs & Spreadsheets for this effort. The spreadsheets can be imported and exported in various formats so that you can download them to your own computer and sort them as you prefer. Good news, from my perspective, is that Google has set this service up so that authors can collaborate with others on both documents and spreadsheets. That means that you can volunteer to help in this effort!
The first spreadsheet that I have set up is "Texas Congressional Delegation: 2007-2008." When completed, this spreadsheet will include contact information for Texas members of the U. S. House of Representatives and Senate. If you want to help complete this set of data, drop me an email at cparker AT texasaids DOT net. I'll add you as a collaborator, and you can get right to work.
Other spreadsheets will be prepared for the Texas House, Senate, and State Board of Education. Again, if you want to help with this effort, send me an email and I will add you as a collaborator. (More collaborators, faster work.)
One other result of the election is that the 80th Texas Legislature, while it begins its regular session in January, will begin pre-filing legislation tomorrow. The capitol website will allow you to see these bills as they are filed and to set up your own tracking list for them. Expect this session to be an active one for HIV-related legislation.
Tuesday, October 31, 2006
I agree that the issue of accountability applies to both sides of this issue. However, rather than being divisive and aggressive, perhaps an olive branch would be more effective. Stressing overlap[p]ing interests is often much more effective than emphasizing differences. The key goal must be to cure AIDS, but first that will take real understanding.My first response to Dr. Clark's comments was somewhat defensive. Being divisive is not such a good thing in my world view. A moment or two of thinking about the matter, however, led me to opine that we are already divided on the issue of HIV and have been since the beginning of the epidemic.
. . .
In summary, rather than citing differences, maybe AIDS activists can come together with everyone in the world by emphasizing that we are all humans that are negatively impacted by these disease states. And that fighting with each other is not the right answer!
We, meaning Americans here but clearly applicable in other societies, have always viewed the epidemic as something that happens to the less-worthy "other." It has always been a dividing point between us and them, whoever "them" might be at any point in the epidemic.
Dr. Clark points out that "we are all humans." Oh, very yes! I recall a speech I made in San Angelo soon after I first came to Texas AIDS Network in which I talked about my sense that the AIDS epidemic was casting a very harsh spotlight on the cracks in the foundation of our society. Since AIDS seemed most to affect those whom we Americans were most willing to throw away--gay men, people of any color besides white, children, women--it seemed to me that the AIDS epidemic gave us the perfect opportunity to repair those cracks. Since HIV is an equal opportunity virus, I said, we need to rethink the divisions that hold us apart and realize that we are all affected by AIDS in one way or another. Therefore, I said, it behooves us to let go of those divisions and begin to work together to end the epidemic as well as the divisions.
Lo, these many years later, the divisions still exist. Rather than taking the opportunity to repair those cracks, we've used the HIV epidemic to widen them. And, while my comments regarding the World AIDS Day 2006 theme of accountability were not intended to be divisive, they were certainly intended to be aggressive.
I'm getting older by the minute and tireder. I am tired of the rhetoric about gay people and those who would use that rhetoric to hinder effective HIV prevention. Get over it already. I am tired of the lies that are told about condoms in the misguided hope that young people will cross their legs and remain abstinent. The result is that they are crossing their fingers instead of their legs--and putting themselves at greater risk for disease and pregnancy. I'm tired of ignorance about science in our country. And, while I'm making that point, could I just ask: How is it that the science that tells us to take an aspirin to help prevent heart disease is better than the science that prevents cervical cancer? I'm tired of the hypocrisy that claims to hold to a particular moral philosphy and then violates that philosophy in word and in deed. Did "do unto others" suddenly change from "as you would have them do unto you" into "as much as you can get away with"?
I'm tired of these things, but I'm not so tired that I wouldn't sit down with folks and talk about ways to move forward on treating and preventing HIV. What I am too tired to do is to allow them to change the subject to a side issue that isn't about HIV at all but rather looks at some other agenda. If we can't talk about the same subject, we're not talking at all.
Dr. Clark is absolutely right, of course. His recommendation has been my philosophy and my practice for years. The only problem is, I can't seem to get some folks to take that olive branch. Isn't it time we held them accountable for that?
Monday, October 30, 2006
The theme of accountability, with the slogan 'Stop AIDS: Keep the Promise', was chosen in consultation with civil society campaign groups to stress the critical need to meet current commitments to increase the global response to AIDS and bring universal access to treatment, care and prevention by 2010.
Curtis' article explores the theme in some detail, providing an international context for the concept.
The concept of accountability is a complex one. It is certainly au courant in the US, being used in one way or another in just about every political campaign we see these days. I'd like to see some exploration of the concept in terms of the current HIV epidemic in Texas.
Can we look for accountability from those who:
- argue against increased funding for HIV prevention, services, and treatment?
- continue to cite false information about the effectiveness of condoms, with the result that sexually active young people now distrust condoms to protect them against HIV?
- offer false hope to people living with HIV by promoting junk science and questionable products, turning them away from proven therapies and better health?
- block effective sex education in our public schools, depriving young people of scientifically correct information that they need to remain healthy, all because of wishful thinking that "just say no" is an actual prevention strategy?
- people who claim to be moral but who also have no charity in their attitudes toward people living with HIV, as if leaving them to suffer were the righteous thing to do?
Yes, I'd like to see some real accountability in our fight against HIV. Wouldn't you?
Persons living with HIV/AIDS, often diagnosed in the first few decades of their lives, may now face decades more of life while managing the illness. Increasingly, the population of persons with HIV/AIDS consists of women, persons of color, and persons who have poor social supports and limited education and financial resources. In addition, many persons with HIV/AIDS may be challenged with mental illness, substance abuse, homelessness and other co-morbid conditions. Not surprisingly, people with HIV/AIDS struggle to overcome significant challenges that affect their abilities to live independently and return to the workforce.
The collection of articles in this issue of WORK explores all of these matters and more. Unfortunately, only the article abstracts are available on line. Ordering the full issue will set you back almost $250, but you can recommend that your local library acquire it or get it for you on
Thursday, October 12, 2006
I'm not even going to bother with the usual blather about "no scientific evidence," yadda yadda. This product is just pure cr@p. People who market it are preying upon sick people, trying to take their money while promising them the impossible.
I was surprised to find a notice in my mailbox today that the FDA had had to send a warning letter out to a company that was actually marketing this product. Not surprised that the FDA sent the warning, but that there was actually a need to. Do Americans have so little understanding of science that they are gullible enough to buy this stuff?
The following is a list of NLAAD-related events taking place around Texas, provided by (but not endorsed by Texas Department of State Health Services, HIV/STD Program, and published in the Texas HIV/STD E-Update).
The C.A.R.E. Program and the Mission of Restoration Program will sponsor an NLAAD event in East Austin. The event will take place at the Mission of Restoration Drop-In Center, 749 Montopolis Dr., on Friday, October 13. The event will feature HIV testing, counseling, referrals, and information along with drug counseling and referrals, blood pressure/blood sugar tests, and general health information. All services are free. Call 512-247-2222 for more information.
The Texas Department of State Health Services' (DSHS) HIV/STD Program will observe NLAAD with a presentation on HIV-related initiatives along the Texas/Mexico border on Tuesday, October 17 from 10-11:30am in room K-100 (auditorium) at the DSHS main campus, 1100 W. 49th St., in Austin. Scheduled presentations include the Cross-Border HIV/AIDS Multisectorial Policy Group, the Paso del Norte Study of risk behaviors and disease prevalence among IDUs, and the Migrant Clinicians Network. All are welcome to attend this presentation. Call Greg Beets at 512-533-3025 for more information.
The Coastal Bend AIDS Foundation (CBAF) is partnering with the Valley AIDS Council (VAC) Clinic to launch a social marketing campaign to educate Latino/Chicano communities in the Coastal Bend Area about the risk of HIV/AIDS. The campaign also seeks to encourage people to get tested for HIV and to access HIV care services if needed. VAC staff will use the local English and Spanish language media to promote the campaign. Appearances are scheduled on local channels KIII (ABC) and KORO (Univision). The campaign message will be critical to normalizing the presence of HIV as a community problem for the Hispanic/Chicano community. Local HIV/AIDS statistics and trends will be provided and prevention messages will be connected to CBAF’s prevention efforts in Molina, a predominately minority neighborhood on the Westside of Corpus Christi. Testing will be provided at this location from 1-6pm. Testing will also be conducted at CBAF offices on 400 Mann Street, Suite 800, in Corpus Christi from 9am to 5pm. For more information, please call 361-841-2001.
The Dallas County Health & Human Services Department (Mobile Medical Clinic) will co-host two functions to commemorate NLAAD in collaboration with multiple Dallas County community-based organizations. On Sunday October 15, the department will offer HIV/STD education and HIV/syphilis testing in collaboration with Resource Center of Dallas at Kaliente's (parking lot), 4350 Maple Av. at Hondo Av., from 7-11pm. On Monday October 16, the department will provide HIV/STD education and HIV/syphilis testing in collaboration with AIDS Interfaith of Dallas at the Mexican Consulate Office of Dallas, 8855 N. Stemmons Fwy., from 10am to 3pm. For additional information, please contact Monica Tunstle Garrett, Dallas County Health & Human Services, at 214-819-2132.
On Sunday, October 15 from 10am to 2pm, Dallas area HIV-related organizations will commemorate NLAAD with an outreach event at Bachman Lake, located at Bachman Lake Drive and Northwest Hwy. Participating organizations include the Latino Commission on AIDS, Greater Dallas Council on Alcohol & Drug Abuse, Valiente DFW LGBTQ, Mosaic Family Services, Inc., Dallas Legal Hospice, and AIDS Arms, Inc. Trained volunteers will be utilizing the OraQuick Advanced HIV Antibody Test, which provides clients with results in as little as 20 minutes. For additional information regarding this event, please contact Efren Garcia at Greater Dallas Council on Alcohol & Drug Abuse, 214-893-5458.
Planned Parenthood Center of El Paso will conduct HIV awareness and testing events on Wednesday, October 11 from 9am to 1pm at the El Paso Mexican Consulate and on Monday, October 16 at El Paso Community College, Valle Verde Campus, from 10am to 2pm. The goal of these events is to reach as many Latinos as possible in the border area to raise consciousness about the HIV/AIDS epidemic in the Latino community. Other agencies have been invited to participate in this event, including La Fe, Thomason General Hospital, the Binational AIDS Committee, and other local ASOs. Entertainment and Mexican folkloric dances will be part of the program. For more information, contact Tony Ramos at tony.ramosATppcep.org.
Aliviane, Inc. in El Paso will be providing confidential HIV screenings and Texas A & M University Prevention Resource Center will be providing information on HIV/AIDS, STDs and Hepatitis A, B, and C. This event will take place Friday, October 27 from 9-11am at Socorro Ramirez Community Center (Sparks Center), 106 Peyton Road in Horizon City. For more information, contact Emma Munoz, Aliviane, Inc., at 915-782-4042, or Susan Hernandez or Juan Garcia at the Texas A & M University Prevention Resource Center, 915-860-9528.
Tarrant County Public Health (TCPH) hosted “Carnaval de Salud” on Saturday, October 7 from 8am to 12pm at 1101 S. Main St. (at Rosedale) in Fort Worth. This wellness event, part of the sixth annual observance of Binational Health Week, included HIV prevention activities. The goal of this event was to provide the Hispanic community with free information on public health as well as screenings for cholesterol, diabetes, high blood pressure, HIV and syphilis. Call 817-321-4700 for more information.
La Gran Plaza Health Fair will take place Saturday, October 14 from 10am to 3pm at the OK Corral Night Club, 4200 South Fwy., in Fort Worth. The goal of this event is to provide the Hispanic community with free information on public health as well as screenings for cholesterol, diabetes, high blood pressure, HIV and syphilis. Please call Santos Navarrette at 817-321-5333 for more information. TCPH will also conduct HIV and syphilis screening at the OK Corral on Saturday night from 9pm to 1am. Please call Brian Barron at 817-321-4863 for more information.
St. Hope Foundation will provide HIV testing for NLAAD on Sunday, October 15 from 12-5pm at Club Carnaval, 8150 Southwest Fwy., in Houston. For more information, contact W. Jeffrey Campbell at 713-778-1300, ext. 230.
Special Health Resources for Texas, Inc. (SHRT) will provide education, counseling, and testing in Tyler on Sunday, October 15 at La Michoacana, 310 N. Beckham, from 10am to 4pm, and in Longview on Monday, October 16 at La Michoacana, 1419 S. Green St., from 10am to 4pm. For more information, contact Ernesto Guevara at 903-234-8808, ext. 246.
Health Horizons of East Texas will conduct a community education and awareness event on Thursday, October 12 at 6pm at 2604 Stallings Drive in Nacogdoches. Free HIV testing will be available. Free HIV testing will also be available on Monday, October 16 at 412 North Street, Suite F. For more information, call toll-free 800-745-8240.
Ector County Health Department will conduct an NLAAD event on Thursday, October 12 from 5-1pm at LULAC’s “La Raza,” located at the University of Texas of the Permian Basin campus at 4901 E. University. For more information, call Jackie Venske or Lynn Gorton at 432-498-4141.
The San Antonio Prevention Collaborative (SAPC) will be hosting the following NLAAD-related activities:
Thursday October 12
6:30pm: Procession of Hope, San Fernando Cathedral (meet at Main Plaza)
9-12pm: HIV Testing, food, activities, door prizes at Bermuda Triangle, 119 El Mio
Friday October 13
8:30-10:30am: HIV testing and food at University Health System/FFACTS Clinic 527 N. Leona
Saturday October 14
10am-2pm: HIV testing, music, activities, and door prizes at Good Samaritan Center, 1600 Saltillo
7pm-12am: HIV testing and door prizes Stewart Center 1711 Guadalupe St.
Sunday, October 15
12-4pm: Free HIV testing and prizes at “Festival de la Salud,” Alamodome
The SAPC has joined forces to offer HIV screenings to the population in the San Antonio area that might not otherwise access testing sites due to stigma and denial. The collaborative is comprised of Avendida Guadalupe, BEAT AIDS, Good Samaritan, Community Clinic/Project Save, Mujeres Unidas, Hope Action Care, San Antonio Metro Health District (SAMHD), and the University Health System. The SAPC feels that offering a wide range of events in a health fair setting will help reduce the stigma associated with this pandemic. For more information, contact George Perez (SAMHD) at 210-207-8071 or Yvette Moran (Mujeres Unidas) at 210-738-3393.
The San Antonio AIDS Foundation will offer HIV testing from 8am to 6pm on Monday, October 16 at 818 E. Grayson St. For more information, please contact Vanessa Gonzales at 210-225-4715.
Tuesday, October 10, 2006
We are fortunate to have an ever-growing number of participants in the Carnival. This month we are pleased to welcome several new blogs and bloggers to the dialogue about AIDS and the people and communities that are affected by HIV/AIDS. In addition to several contributors from the US, we have contributions from central Asia, southern Africa, Canada, and Mexico. The topics covered by these articles show the diverse responses to the epidemic around the world at the same time they reveal the commonalities of people, places, and problems.
In many parts of the world, people affected by AIDS have no voice with which to speak to their families and community much less the world about their fears, their suffering, their hopes. This is due in no small part to the strong stigma attached to being HIV-positive, which stifles their voice and condemns them to silence. It is also due to the lack of tools to help project one's voice to those who need to hear it.
Cristi Hegranes writes in "El banco" about the day she took five women to a bank in Chiapas, Mexico, to open their first bank account with their first earnings. As Hegranes' post shows, having a voice is important on many levels:
"maria antonieta, “tonita,” was first. she is so quiet. sitting right next to her i could barely hear her speak. i think she was nervous b/c she doesn’t have a permanent address and she was using a copy of the gas bill from our office as proof of residence. she was asked a million questions, each reply came in a whisper until she was asked for her occupation — “SOY UNA PERIODISTA,” she bellowed. when asked for her place of employment she whipped out her new press pass and declared just as loudly “EL INSTITUTO DE PRENSA PARA MUJERES DE MEXICO.”The Press Institute for Women in the Developing World trains women to become reporters, focusing on six core themes, including AIDS, violence against women, reproductive rights, poverty, political oppression and community development. Those who have something to say about AIDS need a voice; having voice, the benefits accrue to them as well as to their audience.
Blogswana describes itself as "Botswana, AIDS and Blogging." Brian has an August post in Blogswana which incorporates Ron Hudson's "En-COURAGE-ment to Blog for HIV/AIDS," and makes the case for using the voice that we have:
The act of speaking out in your own voice requires courage and strength of character and a strong desire to be heard. For many living in the world [of] HIV/AIDS, our voices have been silenced by fear, anxiety, social stigma and threats of death or injury. Now more than ever, we need to speak out and let the world hear our voices.Not so long after that, Brian posted a lengthy list of "Botswana Blogs," several of which focus on AIDS. Given the tools, it's clear that there is great courage in the HIV/AIDS community.
In yet another take on "voice," Jody Kuchar writes about "AIDS WALK 2006" in Gray Matter Flatulence. She writes first about her participation in AIDS walks in Milwaukee and the vicious tactics the "Christian right hate groups" used to intimidate walkers and disrupt the event. Kuchar talks about her reaction to these tactics--anger, not fear--and her decision to put her time and energy into volunteering at a hospice. Still she questioned her decision:
Whenever my husband and I went to serve dinners or help at hospice, we did do good work and were appreciated for it. But it was silent work - we educated no one, we did not alleviate intolerance or hatred.Now living in Indianapolis, Kuchar is once more determined to make her voice heard: She will walk in AIDS Walk 2006.
Life after AIDS
By now, most of the world has come to the realization that there really is life after HIV and even life after AIDS. Given the fairy tales found in some pharmaceutical advertising and the distortions of media reports, it is no wonder that many have no clue what that life is like.
Ron Hudson has an "official" contribution to this month's Carnival, but I couldn't pass up his poignant description of "Clearing Out Your Closet." When he first sent me the link to the article, I thought it was going to be an essay about clearing out the mental clutter that keeps us from focusing more clearly on the task before us (which shows you what I need to be doing). Instead, it is a reminder that we all must cope--somehow--with life after AIDS.
Written for this past World AIDS Day, Ron's post is a different take on "the Day" and what it has come to stand for. Positive, proactive, inspirational slogans do help motivate us to keep going, to keep doing the work that we do in prevention, care, policy. All the slogans cannot, however, cover up the underlying grief and loss that we all must feel when World AIDS Day rolls around, when we open the doors to the closets of our memory and do as Ron did:
I sat on the bed and watched. He opened the door to your closet and started removing the clothes that hung there, one hanger at a time. He would hold the shirts to him, breathing in deeply to find a hint of your smell.AIDS still kills. Part of the horror is that some of us have to keep on living with the loss.
The Dreamer writes about a different way that those living with HIV must cope with that life. "Mangled in the Medical Machine - 2" is the second part of a three-part series on the nightmare that comes with needing surgery when you are HIV-positive. His blog, appropriately enough, is called Nightmare Hall.
The Dreamer chronicles in vivid detail his medication regime and the effects it has on his HIV disease as well as the debilitating side effects. As the side effects get worse, it is his chronic pain which begins to take over as a major health concern.
By June of 2005 my doctor decided to take me off all meds for an extended [trial] period since my counts [had] remained excellent for so long. The neuropathy [had] grown almost unbearable and my left leg was withering away faster than ever to [where] I was losing my balance and now the right leg began wasting faster and faster....In July my weak leg gave out under me and I fell backward fracturing my spine to boot.The tendency in the healthcare system to blame every illness on HIV rather than look for other causes, the truly experimental nature of HIV treatment for individuals, the increasing need to know one's disease and to reverse patient-doctor roles by becoming the one who is knowledgeable about treatment options--these, too, are part of life after AIDS.
High Fiber For The High Fiver is LWood's blog, a delightful take on living with HIV and, as he says, "the way I like to play with labels." I won't give it away, but "Happy Valentines Day (non negatively)" will make you smile.
The CDC has finally stopped teasing us and issued its recommendation that HIV testing should become a routine part of health care. While I've had my own (cautious) thoughts on the subject, two of our contributors this month chime in with their own thoughts.
Nels Highberg's blog is called A Delicate Boy . . . In the Hysterical Realm. In "Testing, Testing . . . ," he pushes the "on" button and starts listing his concerns about routine testing. He moves from lack of consent to skewed counseling to increased stigma, the latter, I might add, despite the CDC's professed belief that a policy of routine testing will reduce the stigma surrounding testing. Highberg continues with concerns about insurance, criminalization, and--my own hobby horse--the overburdened, underfunded system that provides care for those living with HIV. As Highberg says of AIDS service organizations:
They don't get the money they need to do they work they want to do. And these new guidelines mention nothing about increased services.Word.*
Walter Senterfitt, in a guest post at AIDS-write.org, gives us "CHAMP HHS Watch--A Test of Our Commitment: What would it really take to fix HIV testing?" Senterfitt tosses out a breathtaking array of facts and research findings, all to say "The fix is not in." His argument carefully grants some validity to CDC's proposal for routine testing at the same time he places that proposal in the context of a long line of failed panaceas proposed by the CDC and points out some serious gaps in the proposal.
Senterfitt's own proposal? Comprehensive operations research on the effectiveness of these guidelines at the same time they are being promoted and implemented. He asks:
wouldn’t it be great it we could turn this next period of predictable resistance and confusion over implementation into a real dialogue among the feds, the docs, the healthcare execs, the community-based organizations serving high-risk communities and the people living with hiv to come up with a comprehensive plan to offer real treatment and real prevention for everyone in at country with, or at risk for, hiv[?]Brian Finch gives us "Nearly all HIV infections come from undiagnosed people" from his blog, Acid Reflux. In this post, Finch is looking at the role that the "unknowing" play in expanding the epidemic in the US. He adds some thoughts on the Canadian context and extensive quotes from an article about sero-sorting among HIV-negative gay men in Australia. Finch's post argues that:
Understanding who is more likely to transmit HIV helps us make our minds up on some of the contentious issues in HIV prevention like universal testing and sero-sorting, and the wisdom of criminalising HIV transmission, which tends to penalise people already aware of their HIV status.Prevention Messaging
The lion's share of funding for HIV/AIDS in the US seems to be spent on medical research and treatment. The pittance that is spent on prevention is shrinking both in proportion and in absolute dollars. These facts alone suggest that is becoming increasingly important to make sure that our prevention messages are crystal clear and effectively targeted.
In the Blog to end AIDS, Akira Ohiso looks at Ian Daly's "Whatever Happened to Safe Sex?" Ohiso reports Daly's conclusions, that "denial, fatalism of our current world climate, misleading media information, and the Bush administration's misdirected abstinence education assault" did in safer sex. Ohiso's own opinion:
. . . , the most egregious reason for the rise in STDs and HIV/AIDS is the religious ideological abstinence and anti-condom message of the Bush administration. The Bush administration and his right-wing gang will support millions of dollars in abstinence education, while cutting spending on prevention programs, fully knowing that prevention programs are much more effective.
Ron Hudson's official entry for this month's Carnival from his blog, 2sides2ron, is "Instructions on How to Use a Condom." As with the earlier essay on clearing closets, I was somewhat nonplussed. What on earth, I thought, was Ron going to say about condom instructions? Was this post even necessary given the abundance of information on the subject.
As it turns out, yes, the post was necessary. As Ron points out, in the context of the ongoing War on Condoms, a free and independent voice is needed to provide life-saving information to those who have been deprived of it or given misleading information. Ron's concern, too, is global: "I hope that this information reaches you in countries that have been forced to accept policy that has failed in the US as well."
Ben posts on neweurasia.net news of a regional HIV/AIDS conference. The existence of neweurasia.net provides another outlet for voice in a world where voice is frequently stifled as a matter of policy. This post focuses on the broad regional interest in HIV/AIDS and a shared concern that prevention funding be adequate to continue trends which, when compared to Russia and the Ukraine, are only "comparatively good."
Our last contribution, "Can," is from Rick Reilly. While this article, originally published in Sports Illustrated, is not a blog post per se, it gives a message that we can all use: Can! (Not can't). Read the article, watch the video (with plenty of tissues handy), and imagine: CAN!
And that concludes ICP-4. If you liked it, please consider linking to it from your site. The next edition will be published on or about November 10. To submit a blog post for inclusion, fill out the submission form on the ICP web site.
- "Doctors are not gods, merely highly paid troubleshooters of wetware." -- The Dreamer
- "I just don't think out culture should sugar-coat the realities of [HIV] disease. It kicks ass and hard and you better believe it." -- Ron Hudson
- "I bought into our society's message that gay equaled AIDS." -- Nels P. Highberg
- "AIDS seems to be a disease of 'those people' again." -- Nels P. Highberg
*Yes, I know that "nobody says 'word'" anymore. Meh.
Tuesday, September 26, 2006
Pharmaceutical Research and Manufacturers of America, the pharmaceutical industry's trade association, said in a statement that a decision whether to join the Coalition for a Stronger FDA is ``still under consideration." It also has not decided whether to endorse redirecting user fees to help improve drug safety.
Yo, PhRMA! It's a no brainer.
"She's been the face of, as far as the public face of, the U.S. government commitment on AIDS, on human rights, on democracy," McBride [Mrs. Bush's chief of staff] said. "So I think he's seen what all of you have seen -- she's been a voice for the commitments that the U.S. government is making on these issues."
Oh, dear. Is that the same face that forced the withdrawal of a WHO resolution on AIDS treatment?
AUCKLAND, New Zealand A resolution calling for universal access to HIV/AIDS treatment has been withdrawn from the World Health Organization's Asia-Pacific conference because the United States insisted on changing it, senior officials said Friday.Or was the real face of US policy on HIV meant to be hidden while the public face smiles . . . vacuously?
American officials submitted a series of last-minute amendments to remove expressions of support in the resolution for items such as needle exchange programs for drug addicts, said officials at the meeting in Auckland, New Zealand's largest city.
New Zealand Health Minister Pete Hodgson, who chaired WHO's annual weeklong conference of officials from the Western Pacific region, said the U.S. amendments would have watered down the resolution.
Friday, September 15, 2006
The parallels to HIV prevention are, however, quite obvious. The same age groups are important for early prevention activities. Both have a significant time lag between risky behavior, infection, and the appearance of life-threatening consequences. The same moral issues have been raised as reasons not to use effective prevention interventions.
The Phillipine article gives a nice run down of the issues surrounding the full utilization of the HPV vaccine at the recommended time with the recommended population, especially the economic and regulatory issues. The "morals issue" got rather short shrift, however:
(a) I somehow doubt we'd ever see such short shrift given to the issue in a U.S. publication. Instead what we tend to see is a lot of reportorial vapors over the concern for the morals of young girls and the parental right to make life and death decisions for the future adults that they will become. (b) I think we've found the right description for opposition to effective prevention, whether it's prevention of HIV or HPV infection: honor killing.
ANOTHER issue that has emerged in the controversy is that of “morals.” “Giving the HPV vaccine to young women could be potentially harmful,” Bridget Maher of the Family Research Council told the British magazine New Scientist, “because they may see it as a license to engage in premarital sex.”
Katha Pollitt, writing in The Nation, comments with tongue firmly in cheek: “Just as it’s better for gays to get AIDS than use condoms, it’s better for a woman to get cancer than have sex before marriage. It’s honor killing on the installment plan.”
Thursday, September 14, 2006
1. The Legislature should support initiatives that will support public health prevention and education programs in an effort to decrease the incidence and severity of chronic disease in the population by enabling individuals to take personal responsibility for their health.Yes, I know there are some code words in here, most notably the infamous "personal responsibility," but, used carefully, this can serve as a talking point in support of the legislative appropriation request for increased funding for HIV services and prevention.
The health workforce is going to be an issue of significant concern to the Texas Legislature when it convenes in January. Aligning the request for increased funding for HIV prevention and services with this concern can be useful in creating a more positive reception for the request.
I do not, however, see this as the whole burden of one's argument in support of this funding, but rather as a passing reference that "appeals" to authority of the SHCC. For example, "Senator So-and-So, this request is precisely the sort of initiative that is included by the Statewide Health Coordinating Council in its recommendations for improving primary care in Texas." Then move on to your other points. If there's any question, you have the reference to the original and can quote it.
Wednesday, September 13, 2006
The caption at the end is "Maisha iko sawa na Trust." There may be some double meanings here as well. My first reading was that it meant "Life is the same as Trust," i.e., life = Trust. A second reading made me think that the phrase was somewhat more idiomatic and might mean "Life is good with Trust."
Trust is the condom brand. The phrase seems to have been their ad slogan for some years. The video and discussions of it have been viral, showing up in web discussions in several languages. The consensus seems to go with my second translation, but I kinda like the first, since it focuses so clearly on the prevention concept rather than a more hedonistic ethic. Still, it's a clever ad. Look for the old baba in the car.
InfoLine Callers Now Forwarded to CDC-INFO
The Texas HIV/STD InfoLine you know so well (800-299-2437) is undergoing some changes.
Until recently, callers who wanted to speak to an information specialist would get a DSHS employee. Callers who request to speak with an information specialist are now automatically forwarded to 1-800-CDC-INFO. This new hotline, which replaces the National AIDS Hotline, provides English, Spanish, and TTY service 24 hours a day, seven days a week. Callers can speak to a live information specialist and receive HIV/STD testing and services referrals for Texas or any other state. The Texas HIV/STD InfoLine will continue to be forwarded to CDC-INFO through the end of 2006.
All callers are still greeted with a menu of informational audio tapes in English and
Spanish. Callers wishing to connect with the Texas HIV Medication Program (THMP) or file a complaint are still connected to DSHS employees.
If you have any questions regarding the InfoLine, please contact Jean Gibson at firstname.lastname@example.org or 512-533-3023.
Calling the InfoLine seems only to net that one change: if you want to talk to an information specialist about HIV or STDs, you get a referral to the CDC Infoline. Otherwise, it's all the same, at least until the end of 2006.
This all came about because the person who managed the InfoLine retired, and the Program has made the decision not to rehire. Instead, there are ongoing discussions with the folks at the 211 program and some thinking about rerecording the info messages, etc. Further changes are not likely before 2007, but we have been reassured that there will be an InfoLine for the foreseeable future.
I was looking to see what educational resources related to condoms were still available on the HIV/STD program's new website--and couldn't find it! Naturally, I couldn't stop myself from being just a tad . . . well . . . paranoid about the possibility of the change from one web address to another being used as an opportunity to scrub some things from the website. Condoms have been a central battleground, so to speak, in the culture wars. As I recall, there had been some rather useful information about condoms on the old website. Did it make it to the new one?
Most of it did indeed make it, but finding it takes some effort. The obvious place to look is under Publications and from there under "Publications and Brochures." That will net you references to two brochures: (6-23) "How to Use a Condom" and its Spanish companion (6-23a). The asterisk after each, however, asserts that you must be a "professional" in order to order the brochure. (I'm pretty sure that the humor was unintended.)
I had to have help from a DSHS employee to find the next links. A search of the site assured me that two fact sheets on condoms did in fact exist on the site, but where were they? How would a member of the public find them? With a little help, we managed to locate them in the section: "What are HIV and STDs?" Under the heading: "Information about STD transmssion (sic) and testing." Not under "Information about HIV transmission and testing." And not under anything that would point you to the concept of prevention.
I suspect that there will be some reworking of the new site so that things are easier to find, especially for the general public looking for prevention information. I'm also thinking it may be time to mirror some of these things on Texas AIDS Net . . .
Tuesday, September 12, 2006
I'm normally a BIG fan of just about anything Google does (well, except for that China thing), but they've missed the boat on this one. It really is a "beta," and not much of one at that.
Why am I kvetching about this on an AIDS blog? Well, it's a blog--and Blogger is what we have to work with right now. Either I learn a lot more about CSS and HTML than I ever wanted to know so we can have a better interface here, or the Blogger team (which already knows this stuff) makes it work for us.
Here's what's missing:
- Better templates (the instructions are not clear to a novice, the options are too limited, where are the new ones?)
- More features (it's nice that Blogger is finally going to add categories and blog rolls, but where is the connection to Google Earth or Calendar or all those other features?)
- Privacy issues (I'm blogging with my real name because this is an "official" blog; what about folks who want some pseudonymity in their blogging? what about folks who have both official and personal blogs? linking everything to your Gmail account makes it hard to keep those separate)
- Three columns (duh!)
- Statistics (duh!)
There are probably more issues, but these are the ones that popped up on the first pass. I think we'll wait until the "beta" goes away before looking at it again.
Even though the article includes a caveat from "CDC spokesperson" Tammy Nunnally that the policy is only under consideration, I fully expect that the next few months will bring it to reality. If so, we'll see something like a quasi-voluntary testing policy (you will be tested unless you refuse) that "offers" the test to every person between the ages of 16 and 60 (or thereabouts) when they enter the health care system. Presumably this would include private as well as public health elements of the system.
The reasons being offered for shifting to routine testing seem to boil down to two things: simplifying testing (by removing mandatory counseling components) and the hope that this policy will duplicate the success of routine testing for pregnant women in reducing new HIV infections. And, of course, the possibility of offering routine testing is assisted by the availability of new tests which provide results in a matter of minutes rather than the wait of two weeks needed in the past.
The results expected include an overall "social desensitization" to HIV testing. Right now, there is sufficient stigma associated with HIV testing, that many who are at risk do not get tested for fear of that stigma. Given that such tests are supposed to be confidential, that whole issue speaks ill of our health care system that it cannot be trusted to keep the mere fact of being tested for HIV confidential. If HIV testing becomes routine, perhaps there will be a concomitant effort to increase the sensitivity of health care providers, especially in the private sector, to handle the results more discreetly.
There is nothing in this proposal, however, that would help with "social desensitization" to an HIV diagnosis. We still remain a society that will judge a person for his/her health status before we are moved to compassion regarding that same health status.
Thursday, September 07, 2006
The new web address: http://www.dshs.state.tx.us/hivstd/default.shtm.
The "home page" shows the new look--which is just like the (bland) DSHS look--with links to other sections of the department's web site. The left side of the page holds the HIV Bureau's links, and I have to say that they are now much easier for me to read and to distinguish one from another. I am more familiar with some sections of the old site than with others.
In those cases where I have some familiarity, it looks like nothing has been lost in the transition. I'd be curious to know what you find in looking at the site.
But, in large parts of this country, America is Africa. With skyrocketing infection rates, poverty, lack of health insurance and a paucity of doctors, people with AIDS in the American rural South face prospects almost as grim as people living with AIDS in Africa.
The Kaiser Daily HIV/AIDS Report gives this summary of his op ed (emphasis added):
Over the last few years, the U.S. increasingly has "turned its attention" to the HIV/AIDS "crisis" in Africa even though in "large parts of this country, America is Africa," Patrick Moore, author of "Tweaked: A Crystal Meth Memoir," writes in a Long Island Newsday opinion piece. "With skyrocketing infection rates, poverty, lack of health insurance and a paucity of doctors, people with AIDS in the American rural South face prospects almost as grim as people living with AIDS in Africa," Moore writes. According to Moore, the "deeper story" of how HIV/AIDS in parts of the U.S. compares to the situation in developing countries "involves not just racism but our national character as a whole." The U.S. tends to "bounce along from one crisis to another, without addressing underlying, persistent problems," such as injection drug use, poverty and the "failure of the American health care system," Moore writes. According to Moore, the "solution" to fighting domestic HIV/AIDS is "not to reapportion a shrinking pool of existing funds but to increase the funding to appropriate levels for the entire country." Moore writes, "None of this is to argue that we should decrease funding to AIDS programs in Africa," concluding, "In fact, we can have greater compassion for Africa if we understand that this disease remains a crisis at home as well. When that awareness is achieved, we can be proud to say America is Africa" (Moore, Long Island Newsday, 9/6).
I could have highlighted several other phrases, but I focused on the funding issue because that one seems to be the easiest and simplest to deal with. Issues of national character (bouncing along the surface of crises without dealing with underlying causes) and chronic infrastructural probems (failure of the health care system) are neither attractive to policy makers nor amenable to solution in the near term. Full funding for the Ryan White CARE Act is. Doing so should take nothing, of course, from concern and support for dealing with HIV in Africa. That's a serious issue and really is in our national interest to address--completely apart from the humanitarian issues there. We should not, however, allow the media or policymakers to distract us--or themselves--from the serious issue of HIV at home by focusing more attention on Africa than on America when there are waiting lists for medications in this country, when people on those waiting lists die for lack of medication, when AIDS drug assistance programs cannot provide all of the medications that are needed to meet the standard of care for this nation in this nation.
Wednesday, September 06, 2006
"Epidemiology of HIV and AIDS Among Adolescents and Young Adults in the United States" Journal of Adolescent Health Vol. 39; No. 2: P. 156-163 (08..06):: María C. Rangel, MD, PhD; Loretta Gavin, MPH, PhD: Christie Reed, MD, MPH, FAAP; Mary G. Fowler, MD; Lisa M. Lee, PhD
The study's conclusion:
National case surveillance data for people ages 13-24 revealed that the burden of HIV/AIDS falls most heavily on the Southern region of the country and disproportionately on black and Hispanic youth, the study found. "The observed increases in the number of HIV cases among men who have sex with men are congruent with recent reports that suggest a resurgence of HIV among these young men," the authors noted. "Our findings highlight the need for intensified HIV prevention efforts within minority communities and among men who have sex with men as well as strengthened efforts to encourage at-risk youth to get tested for
HIV," the researchers concluded.
The epidemic is now hitting young people, especially young men who have sex with men, especially black and hispanic youth. Trends show a decline in reported HIV cases among women. In some ways, there might be a tendency to say "we're back where we started." I, however, am thinking that the whole thing is rather like whack-a-mole. You hit it here, and it pops up there. Without a comprehensive approach to prevention, one that goes beyond "just say no," any strong emphasis on one demographic group may lead another group to think that it is not at risk.
Maybe we shouldn't talk about where the epidemic is now, but emphasize that the epidemic shifts. It gains a foothold in one social network and spreads there; awareness and prevention may reduce or eliminate (we can wish) the infection rate in that community, but the virus can easily spread to another where individuals have been less vigilent. Just a thought.
A revised formula for the Ryan White CARE Act is expected to be unveiled in the House in the next week, one year after the act that provides more than $2 billion in federal funding for people living with HIV/AIDS expired. Renewal of Ryan White has been hampered by political infighting and bureaucratic procedures. Revisions to the act will likely see money distributed based on a state's total number of HIV cases, not just AIDS cases. Activists fear such a change, combined with the act's flat funding, could take money away from states and cities that have had longtime epidemics. "A certain amount of redistribution has to be done," said Edward Hopkins, director of federal affairs for the San Francisco AIDS Foundation. "But it can't be done in a way that dismantles the systems of care that already exist." Some legislators were aiming to pass the act by the end of the month, said Hopkins. Critics worry the revised formula will benefit rural regions at the expense of metropolitan areas. The new plan is widely expected to be a reworked version of a Senate plan offered earlier this year by Tom Coburn (R-Okla.). Hillary Clinton (D-N.Y.) in May cast the lone dissenting vote to approve that version in the Senate Committee on Health, Education, Labor and Pensions, arguing her state could lose $20 million under the proposed revisions. Dr. Patricia Hawkins, associate director for policy and external affairs at the Whitman-Walker Clinic in Washington, D.C., said the House plan includes a "hold harmless provision" to limit jurisdictions from losing more than 10 percent of their previous allocation. "That might protect us to some degree," she said. "But the next year, you lose more money, and the next year you lose more money, and so on," she suggested. Activists agree that what is needed is increased funding for the act. While current Ryan White allocations may appear impressive, said AIDS Action Council Executive Director Rebecca Haag, they remain insufficient. "The reality is that we need additional funding to meet that unmet need."
And so it goes. Every time the Ryan White CARE Act comes up for reauthorization, there is a battle over the funding formula. In one of the most unseemly legislative battles one can imagine, people who care for people are forced to fight each other so that they can continue to take care of the people that they care for. Notice that I didn't say "take better care" of those people, just "continue to take care" of them.
The issue is not really whether the Title I cities are getting too much money or the Title II areas getting too little. It's whether Congress ever really wanted to care for those same people and provide the funding necessary to do so. Twenty-five years ago, people really did die on the streets of America--from AIDS. For all of the commitment that Congress has shown these past five years to preventing that from recurring, we may see it again.
Tuesday, September 05, 2006
- It was nice to see Texas folks drop by the site. They came from Austin, McKinney, DeSoto, Dallas, Plano, San Antonio, Duncanville, Houston, and Tyler last month.
- It's interesting to see how the ClustrMap is developing. I haven't gotten around to finding another mapping service; this one may or may not redeem itself. The date on the current map doesn't coordinate with the numbers. I'm pretty sure that that lone dot off on the right side of Africa is supposed to be in Tanzania, not Uganda (hi, Jen). But it's always nice to see lots of dots from lots of places, and another tracking service (Tracksy) is telling me that people really are coming from from various parts of the world for one reason or another. Brazil may show up on the map eventually (at least, Tracksy suggests that it will), giving us (at last) "full coverage" of the continents.
- We noticed that a couple of people tried to sign up as email subscribers in the past few weeks and then didn't show up on the subscriber list. I contacted FeedBlitz about this, wondering if there was some glitch with the feed (or their software). The problem seems to be that signing up is a two-step process. You enter your email address to subscribe and then you confirm your subscription when a confirmation email is sent to that address. If this is not the problem, please let me know.
- ZoomClouds, who provides our current tag cloud is now definitely a keeper. I am tinkering with the format a bit, trying to change the background and setting things up so that the search results that come from clicking on a link pop up in a new window (so you don't lose your place on the blog), but we can only wait and see how well my tinkering works. The good news (for me, at least) is that ZoomClouds has added statistics to its service. I'm sure that I will eventually learn a great deal from these stats about the things that readers are looking for and how to provide more of it. One thing that I have learned already is that you are using the tag cloud to get around the site. In June, for example, you used the tag cloud 273 times to find information on the site. Cool beans. One thing that I can already see from the links that you have clicked is that there are some really weird tags showing up. What I long for is the day that Blogger actually allows for creating tags on each post. Won't that be fun?
And that's it for this month's meta. Unless I think of something else or decide to do more tinkering.
Monday, August 14, 2006
And yet it doesn't seem to go away. Jose Antonio Vargas writes for the Washington Post about DC Young Gay Positives, a social and support organization for HIV-positive young gay men in Washington, DC. The story profiles Josh, a recently diagnosed young man who is having trouble adjusting to his HIV status, and Henderson, an older gay man, still comparatively recently diagnosed, who is active in the organization and trying to help others. While the thrust of the story is the apparent social divide between gay men who are positive and those who are not and the apparent AIDS fatigue that explains the divide, the description of the lives of these two men and the social context in which they live is enlightening.
While the focus of the story is on the DC gay community, it may as well be on US society at large: the denial of HIV as a health risk, the social divide between those who are positive and those who are not, the stigma at work and elsewhere, the increasing risk for young people while effective prevention messages are contradicted by media and social institutions.
Case in point: Time's "Giving AIDS Drugs to Prevent Infection," by Christine Gorman. She begins her article in a manner sure to get attention:
You think giving condoms to high school kids is controversial? How about giving anti-AIDS drugs to folks who aren’t HIV-positive so that they can continue working as prostitutes or engaging in sex without having to worry about their partner's HIV status?
Note the parallelism of the word "giving." In the one case, the reference is to handing out an item for free. In the second case, the reference may be the same, but it may also be to the act of prescribing something that an individual would then purchase. There is no indication in the article that there may be any distinction between the two acts of "giving." There is also no indication of who might be doing the giving or how the gift is paid for. Yet the comment section following the article shows just exactly the reaction this introduction was intended to elicit: "I'm tired of spending my tax dollars . . ."
Gorman's story, despite its benign title, is all about controversy. This includes the fact that some branches of the research trial testing PrEP have been shut down, that there are moral concerns about the prevention strategy being studied, that there may be medical issues related to long term exposure to the drugs used in PrEP. There is little about the prevention context of this research; nothing that would help a reader understand its importance to women or discordant couples. Her emphasis leads the reader directly to mental images of orgy and irresponsible welfare leeches.
I don't often react this strongly to a news story. It could be blood sugar issue. And I'm no great personal fan of PrEP. However, I think it's time to give this sort of journalism a label ("tabloid crap") and this sort of journalist a title ("hack"). Time Magazine has done a better job of covering AIDS issues in the past; someone should have a little chat with the editor who allowed this garbage to get through. As for Ms. Gorman, she should just cross her legs. Then she'll never have to worry about PrEP. I don't know what it would take to get her to stop writing, but maybe she'll take an interest in fashion or celebrity home decor. That might be more suited to her style.
Monday, July 31, 2006
I'm not seeing much coverage of the report in the U.S., however. This doesn't particularly surprise me. And, if there were such coverage, it would also not surprise me if the reporters failed to make a connection between Zimbabwe and the U.S. or, for that matter, Texas.
I'll just help them out a little. While we don't seem to be bulldozing houses where people with HIV/AIDS live in Texas nor do we show overt patterns of exclusion from health care (on the basis of health status), we still have our little human rights quirks.
Nearly every one of the providers with whom we spoke reported serious violations of medical privacy. In New Mexico, a patient first learned that he was HIV-positive from a receptionist in front of a waiting room full of people. Police in St. Louis found a young man's HIV medication when they searched his car and disclosed his HIV status to his father, saying he had a right to know. The New York City Department of Health disclosed a person's HIV status to his employer. A teacher in Florida informed an entire class that a particular student was HIV positive. A receptionist at a nursing home in Texas told a woman that the man holding her baby might give it AIDS. These incidents are likely the tip of the iceberg, for even people who reported egregious breaches of confidentiality were typically too afraid to confront the problem if it meant disclosing their HIV status to more people. Nevertheless, such breaches of confidentiality can and do unravel HIV-positive people's lives. After their HIV status was disclosed, several people were literally driven out of Paris, Texas with hate mail and vandalism of their homes.
Actually, that passage is from an ACLU study, completed in 2003. Notice how often "Texas" occurs as a keyword in that passage. Somehow I doubt things have changed all that much in the past 36 months.
And what this means is: fear of loss of confidentiality, reluctance to get tested, continued spread of HIV, continuing disparaties in accessing health services even when services are available.
Other beneficiaries have underestimated the size of the coverage gap. They incorrectly believed that it would run from $2,250 to $3,600, the figures emphasized in brochures published by the government and insurance companies.
In fact, the coverage gap is twice as large as those numbers would suggest. The $2,250 is a measure of total drug spending. The $3,600 is a measure of out-of-pocket costs; it corresponds to about $5,100 in total drug spending. Under the standard benefit, a consumer is personally responsible for $2,850 of drug spending in the coverage gap — the amount from $2,250 to $5,100.
If I understand this, the initial coverage is calculated on the cost of the medications that a consumer receives. What the consumer pays does not matter. While the initial amount of $2,250 was set there because that was the average cost paid by Medicare consumers for medications prior to the introduction of this benefit, the program is not counting consumer cost but cost to the program for medications. That means, of course, that those with only average or below average medication needs might save some money on the program--if premiums and co-pays do not exceed what they paid for medications in the past. With a 25 percent co-pay, this first segment of coverage involves consumers paying $562.50 for $2,250 in medications, plus the monthly cost of premiums.
For those with "above average" medication needs, say someone with HIV, the program counts the cost of medications up to $2,250--not counting premiums and co-pays--and then counts out-of-pocket expenses--premiums, co-pays, medication costs--in the gap before beginning catastrophic coverage. The co-pay is 100 percent of $2850 in medications, plus the cost of monthly premiums.
The total that the consumer would pay in drug costs prior to catatrophic coverage is apparently $3,412.50. Is the remainder the estimated cost of premiums? What a cockamammy program!
Friday, July 28, 2006
busy creating a free basic HIV/AIDS video curriculum in English. On the web site, you can already see:
- Introduction to HIV and AIDS: What You Need to Know (17 min.)
- Top Ten Myths About HIV/AIDS (9 min.)
- Crystal Methamphetamine and HIV: The Connection (7 min.)
Krock says that the curriculum will be rounded out with a video on prevention for positives and one on sterilizing drug works in the near future. The next phase of the organization's work includes getting this basic "doctor-approved" curriculum translated and filmed in "every language in the world."
In the meantime, the site provides links to videos already available in other languages and English from several other organizations, including PBS, faith-based organizations, and others.
The videos are free for viewing online or for downloading. The site takes a neutral point of view, but acknowledges that some of the video sources to which it links may not. This looks like a good resource for prevention workers and for individuals seeking prevention information.
Thursday, July 27, 2006
Topic areas include planning, events, stigma, medications, local meetings, and so on. While some of the discussion has a local flair, there is focus on state and national concerns. It's worth a visit.
Tuesday, July 25, 2006
*Yep, there really is a Toronto, Texas. It's out there off Hwy 67 between Alpine and Marfa, which is why neither of us have ever heard of it before. Now I'm curious to know more about it, but that's for another day.
Tuesday, July 18, 2006
From the squealing, it's clear that some things will be reimbursed at lower rates, e.g., hip transplants. There's not information that I can see about where increased reimbursement is going to happen--and that is the part of the story that is missing so far. The feds are apparently going to shift things around, pay more for some things, less for others, not save any money, just make things a little more in line with current thinking about health care priorities.
Now I don't know what those priorities are and where the money is going. I'd save the squealing until we see the whole picture here.
Monday, July 17, 2006
This time the cuts are in Denton County, according to Ava Thomas Benson, reporting for the Denton Record-Chronicle and republished in the Dallas Morning News. Among the agencies facing cuts is AIDS Services of North Texas. The rationale for the cuts is that the county is only going to fund those agencies that provide the services that the county would have to provide anyway--that is, they don't want to raise taxes to pay for health and social services. It's a Texas thing.