Saturday, April 29, 2006
To make sure that your ticket is assigned to the Network, you have to give your server a coupon. Here's the coupon:
Print this post, cut out our logo, and, Bob's your uncle, you have a coupon. I am told that they will take any scrap of paper with our name on it, but this is so much prettier, don't you think?
- Include a request for increased funding for HIV in its LAR for 2008-2009;
- Make that request a high priority; and
- Make a request that goes beyond current services to better meet the needs of the clients served.
With regard to the latter, the Network recommended:
- Request sufficient funds to address the projected shortfall and allow for the program to add new medications for HAART as they are approved by the FDA.
- Request sufficient funds to allow the program to address the needs of clients who are co-infected with Hepatitis C.
- Request sufficient funds to allow the program to provide medications for the treatment of such side effects of HAART as hyperlipidemia, anemia, and hypertension.
Texas AIDS Network also recommended requests for increased funding for services and prevention.
A copy of this testimony has been published on Texas AIDS Net.
Work on a May issue has begun.
Note to Bill Gates: Honey, it would just be so wonderful if you could get all of the little program thingies to work together at the same time. Can't tell you how much I would just love that.
Wednesday, April 26, 2006
DSHS LAR must include a request for increased funding for HIV medications. This is necessary to avert shortfalls in the next biennium. Without the funds, the program will be forced to end new enrollments and create waiting lists. People who must wait for their medications have less successful health outcomes, resulting in hospitalization and in some (documented) cases death.
The history of DSHS (formerly Texas Department of Health, TDH) has been that there is some reluctance to request additional funds for HIV/AIDS. The department is, first of all, subject to the instructions given by the state's leadership on what to ask for. Sometimes the instructions include a requirement to cut the budget by a particular percentage. In the last legislative session, there were instructions to cut budget requests by 5 percent. Always the instructions say that no new funds should be included in the basic budget request. However, state agencies are allowed to request "exceptional items," which include a request for new funds. These exceptional items are where the battles occur, since every penny has to be justified. Not all exceptional item requests are granted. New funds for HIV/AIDS would be an exceptional item request.
The department's reluctance to request HIV funds comes from several sources. One is that there are a lot of competing needs in public health, mental health, and substance abuse. It's easy enough to think that medications for people with HIV/AIDS could be more important than fish tissue testing until there's an outbreak of some nasty infection from Texas' oyster crop. The department has to balance all of these competing needs when making its requests to the legislature.
Another source of reluctance is the fact that there's just always such a need for HIV/AIDS funding. We needed $44 million in 2003. We got $26 million. We needed $15 million in 2005--and got it. The more we go back for funding, the more there is a perception that HIV is getting "too much."
And so on and on. It's not too far beyond speculation to think that reluctance is also bred by the attitudes of legislators toward people with HIV/AIDS. Knowing there's going to be a tough battle would make the strongest person think twice about picking a fight.
One of the goals to be achieved in Friday's hearing is to apply pressure to DSHS to include HIV among its exceptional item requests. The arguments in favor of that include:
- The Texas HIV Medication Program will face a shortfall before the end of this biennium. That means that clients who are currently eligible for the medications that are offered by the program will be turned away. That means that no new medications can be added to the program and some may be cut from the program.
- If clients are put on a waiting list, their disease will not wait. It will progress. If it progresses enough, the client will need medical care from some source. Usually that source will be a local charity hospital, funded by county property taxes, costing much more than the medications would have cost.
- HIV treatment is a key component of HIV prevention. The primary argument offered for getting tested for HIV and knowing one's status is to be able to enter treatment and take care of one's health. A key benefit of this process is the counseling that accompanies it. Being diagnosed with HIV, one is even more attentive to prevention messages and can become a partner in stopping the spread of the disease. Without testing, one can continue to spread the virus unknowingly. Without access to treatment, there is less incentive to be tested. Failing to maintain even the current level of service in the Texas HIV Medication Program will cripple the state's prevention efforts.
And the list could go on. Feel free to add to it in the comments.
The plan itself is a lengthy read, which I cannot claim to have completed. I did, however, race to the pages that dealt with HIV/AIDS and found some interesting tidbits. Herewith some tidbits:
The new information here is the projection of a 5 percent increase in the number of persons living with HIV/AIDS in each of the coming five years (including 2006 apparently). This will presumably increase the number of clients in the Texas HIV Medication Program by 35 percent by the end of 2010, adding (roughly) 4375 clients in that period.
In Texas, the number of persons diagnosed with HIV/AIDS in the next five years is expected to increase approximately 5 percent between years 2006 and 2010. Due to the cumulative effect of longer survival, the number of persons living with HIV/AIDS is expected to increase by 35 percent over the same five-year span from 56,000 at the end of 2005 to 75,600 by the end of 2010.
Quality of life continues to improve for persons with HIV disease with advances in medical management and treatment. The antiretrovirial medications reduce the likelihood of transmission of the virus as they reduce the viral count in infected individuals. Improved physical health in general correlates with better mental health. However, these concomitant gains in mental health are to some degree mitigated by the strong stigma often associated with mental health care in African American communities and by the dwindling availability of HIV-specific mental health care as funds are re-directed to primary medical care and medications.
Costs continue to rise for the medications that have led to tremendous gains in life expectancy and quality of life. Factors driving these costs include:
- Longer use of medication regimens as patients live longer;
- Increased emphasis on HIV testing to identify those infected, which increases the number of persons receiving treatment;
- Use of more medications per person (minimum of three antiretrovirals, with some physicians prescribing four or five antiretrovirals);
- Prices of older medications increasing at a greater rate than inflation; and
- Higher prices for new medication and new formulations released in the market.
The interesting information is the reference to pressure on mental health programs caused by the redirection of funds to "primary medical care and medications" and the lack of any goal statement for HIV/AIDS. The former is interesting (to me) because it makes no mention of the pressure on any other services that might be needed by people living with HIV/AIDS. These services are also facing declining federal funding and pressure from the redirection of funds. The latter is interesting because this entire discussion occurs in the midst of a section on goals for the department.
Indeed there are goal statements for other programs, some quite perfunct ("prevention of obesity") and some more elaborate ("DSHS will improve the health of children, women, families, and individuals, and enhance the capacity of communities to deliver health care services"). There is nothing that speaks of optimizing or preserving services, improving the medication program, or anything else. There's just a list of causes and effects combined with some projections.
This is "interesting" because, in a plan that will likely set the direction of programming and departmental advocacy for the foreseeable future, HIV/AIDS is just a problem for which no solutions have been proposed. "Interesting" is now another word for heartbreak, I guess.
Tuesday, April 25, 2006
VATICAN CITY: "Pope Orders Condoms Study in AIDS Fight" The Guardian (London) (04.24.06):: Barbara McMahon
Pope Benedict has asked senior theologians and scientists to prepare a document that examines the use of condoms as a means of preventing HIV transmission, according to the head of the Vatican's health care ministry. "Soon, the Vatican will issue a document about the use of condoms by persons who have grave diseases, starting with AIDS," Cardinal Javier Lozano Barragan said in an interview published yesterday in La Repubblica newspaper. The Vatican currently opposes the use of condoms as part of its teachings against contraception, arguing that abstaining from sex is the only safe way to stop the spread of HIV/AIDS. But the issue has divided the church's top officials. In the interview, Barragan called it a "very difficult and delicate subject which warrants prudence."Barragan's announcement comes just days after Cardinal Carlo Maria Martini, a contender in last year's papal elections, suggested that condom use is the "lesser evil" in the fight against AIDS. Barragan declined to anticipate any outcome of the study, and it is not clear whether the report will lead to a fundamental shift in church policy.
Looks like Cardinal Martini stirred something up. Or maybe great minds think alike. Whatever. The possibility of a positive statement by the Vatican is a hopeful sign. Now, if we could just get the President to endorse condoms for disease prevention, we might get somewhere.
I have dithered about whether to sign up subscribers from Texas AIDS Blog and have opted for user privacy. I would so like to to send you all our action alerts and newsletter, but it seems a tad intrusive to take advantage of access to your email addresses on the Blog. (Besides, some subscribers don't use FeedBlitz, so I don't have your email addresses anyway.) So, if you wanna (subscribe to the eNews) you gotta (subscribe to the eNews).
As the first issue will tell you, Texas AIDS eNews includes news and information about issues that are important to the Texas HIV/AIDS community. It will also provide information about Texas AIDS Network programs and activities and updates about Texas AIDS Net and Texas AIDS Blog. As subscribers to the Blog, you get some of this information already, so you will have a bit of deja-vu-all-over-again when you read the eNews. OTOH, some of it is not included here, so there will be some actual new news. :)
Monday, April 24, 2006
Apparently, I am limited to 5 articles, and I don't know whether "starring" more articles will let them show up on the list. We'll have to see how that works out. If it doesn't necessitate a lot of manual entry, this may turn out to be a useful feature--letting you keep up with my reading for me. ;)
UPDATE: Well, I starred another one, and it showed up at the top of the list. Read 'em quickly, cuz they'll scroll off (when I get around to checking up on my reading).
On the other hand, I'm open to a bit of laissez faire from the government. Let's not get our skirts all ruffled if folks want to look at the possibilities to be found in MJ. There are far worse things that people could be doing besides sitting around with the munchies.
My thoughts have been turned to the issues, however, thanks to a post at TalkLeft, a (surprise) leftish blog on "The Politics of Crime." TChris writes, in "The FDA Shames Itself Again,"
The FDA's recent claim that marijuana has no medical benefit is a triumph of politics over science, of turf protection over compassion.
The issue arises from the April 20 "interagency advisory" on smoked marijuana for medical purposes issued by the FDA. The money quote is in this paragraph (emphasis added).
Marijuana is listed in schedule I of the Controlled Substances Act (CSA), the most restrictive schedule. The Drug Enforcement Administration (DEA), which administers the CSA, continues to support that placement and FDA concurred because marijuana met the three criteria for placement in Schedule I under 21 U.S.C. 812(b)(1) (e.g., marijuana has a high potential for abuse, has no currently accepted medical use in treatment in the United States, and has a lack of accepted safety for use under medical supervision). Furthermore, there is currently sound evidence that smoked marijuana is harmful. A past evaluation by several Department of Health and Human Services (HHS) agencies, including the Food and Drug Administration (FDA), Substance Abuse and Mental Health Services Administration (SAMHSA) and National Institute for Drug Abuse (NIDA), concluded that no sound scientific studies supported medical use of marijuana for treatment in the United States, and no animal or human data supported the safety or efficacy of marijuana for general medical use. There are alternative FDA-approved medications in existence for treatment of many of the proposed uses of smoked marijuana.
I can see the triumph of politics over science in the "advisory" that the New York Times complained about. Reading between the lines, however, I am less willing to blame the politics on the FDA than on the administration. The FDA, after all, did manage to overcome administration and congressional pressure on the efficacy of condoms. The same, perhaps even greater, pressure is being applied on the matter of marijuana. Without the additional research on marijuana that was available on condoms, the FDA is left in this situation with nothing to say except the bare facts: there isn't enough research yet, the drug approval process requires such research, there are some alternatives available.
Rather than toss word bombs at the FDA, it might be more productive to campaign for more research. Write to Congress, hammer the press, do the things that can lead to change. If marijuana has medical value--and it may--that will show up in the research. There is public support for the legalization of marijuana for medical use. I wouldn't be surprised to see the same or higher support for the research to prove the effectiveness of such use. It's time for elected officials to get out of the way.
Among the recommendations:
- Condom distribution in correctional facilities;
- Annual continuing education on HIV for correctional health care workers;
- Access to HIV counseling and testing for all inmates.
None of this is particularly new, but this time physicians are making the recommendations, and the recommendations are published in a journal that is produced by the CDC. Both factors should carry some weight with policy makers, although [sigh] there's no guarantee that they will get the point. Unless, of course, their constituents (that would be you) help them.
In Texas, we have access to HIV counseling and testing for inmates. It is, however, optional upon admission to a facility. Testing (without recognition of the statutory requirement for counseling) is now mandatory prior to release. The purpose of this policy (which was passed into statute during the last regular legislative session via HB 43) is to protect the civilian community, not inmates, from HIV transmission.The health care professions in Texas, via their professional associations, has been resistant to content-specific continuing education requirements, including education about HIV (or Hepatitis C). The argument is that these professionals are already overburdened with CE requirements and people who need to know more about HIV will seek that information out.
Condom distribution in correctional facilities was introduced in the last regular legislative session (HB 2057), perhaps in response to HB 43, but failed.
The good news is that these issues have been discussed in Texas. The bad news is that people don't quite get it.
Prisoners have at least the right to a healthy environment in their place of incarceration. If sexual contact occurs, no matter whether it is prohibited, the risk for transmission of infectious diseases is present. A more coherent policy regarding counseling and testing is needed as well as effective tools for prevention, including condoms and protection from coerced sex. Health care workers, especially in an environment where turnover is high, need to be properly educated regarding the risks and effects of HIV transmission so that they can assist inmates in making decisions regarding thier health.
The opportunity to continue this discussion exists in the next legislative session. If this is an issue that concerns you, I'd recommend starting the discussion with your elected representatives well in advance of the session. The EID article will be helpful when you do.
Citation: Macher A, Kibble D, Wheeler D. HIV transmission in correctional facility. Emerg Infect Dis [serial on the Internet]. 2006 Apr [date cited]. Available from http://www.cdc.gov/ncidod/EID/vol12no04/05-0484.htm.
Despite the Vatican's opposition to contraception, a senior Roman Catholic cardinal said that condoms are the "lesser evil" when considering the scourge of AIDS. "We must do everything to fight AIDS," Cardinal Carlo Maria Martini, the retired archbishop of Milan, said in Italy's L'Espresso newsweekly. "Certainly, the use of condoms can constitute in certain situations a lesser evil."
So, is he speaking for himself or for the Vatican? Either way, it's a step in the right direction.
[hat tip to hubby (mine, that is)]
Friday, April 21, 2006
The HIV Program at the Texas Department of State Health Services has distributed the following list of related events being held in Texas:
The Wright House Wellness Center is hosting a health seminar entitled, "I Need to Know: HIV/AIDS Breakthroughs" on Friday, April 28 at the Hilton Austin Airport. The seminar will feature breakfast and lunch speakers and breakout workshops that will offer CEUs for those qualified attendees. Registration deadline is noon on Friday, April 21. For more information, contact Suni Niang at 512-467-0088, ext. 16, or suni AT thewrighthouse.org.
The DSHS HIV/STD Program conducted an "STD 101" course on April 10 at the DSHS main campus to educate non-Program employees about HIV and other STDs. In addition, the Program hosted an HIV/STD exhibit at the Health and Human Services Commission's annual Wellness Fair on April 12. For more information, contact Greg Beets at greg.beets AT dshs.state.tx.us, or 512-533-3025.
On April 7, the prevention staff from the Coastal Bend AIDS Foundation (CBAF) provided education on HIV/AIDS/STDs to medical students at Career Centers of Texas in Corpus Christi. The Career Centers of Texas is a private for profit organization that provides educational classes for those aspiring to obtain a career in the health field. On April 12 and 13, CBAF hosted a two-day STD training. CBAF staff attended this training with staff from Corpus Christi Family Planning, South Texas Substance Abuse Recovery Service (STSARS), and staff from the Valley AIDS Council and Planned Parenthood of Hidalgo County.
The Dallas County Syphilis Elimination Coalition put on a two-day display of media, outreach, testing, and education efforts on April 4 and 5 in collaboration with the Dallas County Health Department, LaSima Foundation, and Resource Center Dallas. Free testing for Syphilis and HIV was conducted during the entire week at the Dallas County Health and Human Services building. For more information, please contact Monica Tunstle Garrett at 214-819-2155 or Latrenia Banks at 214-928-9303.
During the month of April, the Dallas County Health Department's Mobile Medical Clinic is being dispatched to various locations in Dallas County with high levels of syphilis, HIV, chlamydia, and gonorrhea morbidity. For locations and times, please call 1-866-4EZ-CURE, or call the Dallas County Health Department at 214-819-2155.
Planned Parenthood Center of El Paso (PPCEP) sponsored a "Beat STDs" piñata party at the University of Texas at El Paso's (UTEP) Student Union Square. The event was co-sponsored by the UTEP Student Development Center and various student organizations like VOX, Lambda, and an international health promoters program funded by Georgetown University. The event featured testing, an "HIV 101" class, and distribution of safer sex kits and educational material. For more information, contact Tony Ramos at 915-543-3062.
Other related activities carried out by PPCEP's Community Education Dept. in April include:
- Abstinence sessions at four El Paso area high schools and middle schools
- STD/HIV presentations at Ft. Bliss' Army Substance Abuse Program
- One-on-one sessions with community youth
- Education sessions for homeless persons at the Opportunity Center
- STD presentations at two El Paso area drug rehabilitation programs
- "Relationships and Intimacy" workshop at Paso Del Norte alternative high school
- Educational outreach at El Paso's Juvenile Probation Department
- Special presentations conducted with Male Involvement Conference at Job Corps, El Paso Young Father's Coalition, and UTEP's nursing program.
For more information about these community education sessions, please contact Rosie Rodriquez at 915-544-8195.
The City of Laredo Health Department conducted several STD health fairs and HIV/STD screening events around the city during April. Event locations include the City of Laredo Health Department building, Webb County Jail, Concilio Hispano Drug Rehabilitation Center, and the Bethany House Homeless Shelter. For more information, please contact Arturo Diaz, Jr. at adiaz2 AT ci.laredo.tx.us.
Health Horizons conducted three health fairs in Jasper and Lufkin during April for National STD Awareness Month. The fairs were held at the Jasper Circuit United Methodist Church, the Hope Center of North Lufkin, and the Faith to Faith Church in Lufkin. On April 6, For more information, please contact Beverly Anders at beverlyanders AT hotmail.com.
The alert lists several talking points that might be used in developing testimony:
- DSHS LAR must include a request for increased funding for HIV medications. This is necessary to avert shortfalls in the next biennium. Without the funds, the program will be forced to end new enrollments and create waiting lists. People who must wait for their medications have less successful health outcomes, resulting in hospitalization and in some (documented) cases death.
- DSHS must give the LAR for HIV a high priority in its request. Despite the projection of a surplus in the state budget, there is no guarantee that appropriators will understand the importance of funding HIV medications without some guidance from the department. The clearest guidance that can be given is to give this appropriation request a high priority.
- DSHS must think outside of the box in formulating its request for funding. The past strategy of limiting requests to current services and basing the request on the most conservative of projections has led to a vicious cycle of requesting increases that turn out to be insufficient to fund the demand for services.
- DSHS must begin to look at the THMP with new eyes. The current formulary does not address issues of co-morbidity and co-infection. While there is some decrease in the need for a full arsenal of medications for opportunistic infections because of HAART, there in an increase in need to address the side effects of HAART. In addition, co-infection with tuberculosis or Hepatitis C has an effect on the success of HAART. THMP, as an ADAP program, was established to fill in the gaps in care for people with HIV/AIDS. Limiting the formulary is a gap that needs to be filled.
- DSHS must seek to improve THMP rather than maintain the status quo. The list of medications approved by the FDA for the treatment of HIV is not static. Financial planning that is static and does not anticipate changes in the formulary will lead to substandard care.
The wise reader would memorize these talking points. It's not that there will be a test at the end of the day, but you will probably hear these talking points over and over again during the next 12 months. If you memorize them, you can chant along with us. ;)
So check out the alert. Just to make sure that folks know how to interpret our alerts, we have a guide: "Components of a Texas AIDS Network Action Alert." If that's not enough, here's our guide on what to do: "Acting on Action Alerts." Belts and Suspenders 'R Us.
The process has begun, and the first public event of the process has been announced. The Texas Department of State Health Services will hold a "stakeholder" hearing on April 28, 9:00 a.m. - noon. The hearing will provide an opportunity for consumers and service providers to give input for the department's consideration in making its legislative appropriations request.
The hearing will be held in Austin but will be open to public participation by video links at the DSHS regional offices. Testimony will be taken in numerical order from the regions. Here are the locations of the video link sites:
DSHS – HSR1: Lubbock Office
1109 Kemper Street, Small Conference Room
Meeting Coordinator: Stormi Valdez Phone: (806)-767-0469
DSHS - HSR2/3: Arlington Office
1301 South Bowen Road, Room 2210
Meeting Coordinator: Sofia Nicholson Phone: (817) 264-4686
DSHS – HSR4: Tyler Office
1517 West Front Street, Room 257
Meeting Coordinator: Teresa Hubbell Phone: (903)-595-3585
DSHS – HSR8: San Antonio Office
7430 Louis Pasteur, Room 130
Meeting Coordinator: Anita Martinez Phone: (210)-949-2003
DSHS - HSR11: Harlingen Office
601 West Sesame Drive, Rockport Room
Meeting Coordinator: Sylvia Garces-Hobbs Phone: (956)-423-0130
DSHS - Austin
1100 West 49th Street, Room 739
Meeting Coordinator: Rosamaria Murillo Phone: (512)-458-7404
The main hearing site will be at DSHS headquarters in Austin, 1100 W. 49th St., Room K-100. Regional participants are requested to email the meeting coordinators to indicate their intention to attend so that adequate seating will be available.
Monday, April 17, 2006
Steve spent hours at www.medicare.gov, entering the names of drugs and searching the database to find out which drugs were offered by which Texas plan. He put it all into one spreadsheet so that others wouldn't have to do the tedious and maddening searches for themselves.
Although the drug lists can change rather quickly, Steve's booklet makes a good starting point for those who still haven't figured out which plan is best for their circumstances.
The Advocacy Project is a community volunteer coalition that advocates as one voice at the Federal level to raise the visibility of HIV/AIDS related issues and to aid in effecting changes in legislation, appropriations and education. For information about The Advocacy Project, call 832-922-0849 or email theadvocacyproject AT swbell.net.
Friday, April 14, 2006
Last night's episode was one of those that included HIV in the story line. In a nutshell, HIV-positive pregnant woman is missing; FBI team looks for her; interesting plot twists ensue. What disturbed me about the episode was the carefully neutral-verging-on-positive attitudes of the FBI agents. They didn't seem to be particularly repelled by the woman's status nor judgmental about her decision to have a child. They were clearly negative in their attitudes toward the wandering husband, so it is not a case of maintaining a professionally neutral attitude. On the other hand, one health care worker (a phlebotomist) was shown voicing negative opinions to the HIV-positive character in very strong terms (good acting: you just wanted to slap her!). The neutral-positive attitudes of the FBI characters allowed them to make statements about the need to get the woman to the hospital for a C-section so she wouldn't pass the virus on to her baby and to cite transmission statistics to the phlebotomist. While it was helpful to see the positive attitudes and to have that sort of information shown on television, there was no mention that I heard of the role of medications in preventing perinatal transmission. It was as if Caesarean birth were the only means of preventing infection.
Another disturbing area was the fact that the woman and her husband were a discordant couple. There was clear judgement from the story writers about the old boyfriend who had infected the woman. There was judgement about the husband and his affair, but that judgement seemed to be focused on adultery and not on the possibility of transmitting the virus. There was no curiosity about how the couple managed to get the wife pregnant without risking infection of the husband. The word "condom" was never uttered.
While positive for its portrayal of an HIV-positive woman and her desire to have a child, the show left more questions and even misapprehensions about prevention. I'm guessing that I am going to be mulling this one over for quite a while.
This paper presents data from a brief, anonymous, open-ended survey of 50 behavioral research experts in HIV prevention. Responses were received from 31 participants who provided input regarding the primary reasons they believe the rate of the HIV epidemic in the United States has persisted in recent years, and how they believe we can most efficiently decrease the current rate of new HIV infections in the United States. Four clusters of reasons suggested for the persistent rate of new infections: Intervention level reasons, Society level reasons, Person level reasons, and Multiple Risk Factor reasons. Three clusters of strategies suggested for decreasing the current rate: Improved Targeting of HIV Prevention efforts, Large-Scale Changes to HIV prevention, and Integrating HIV Prevention into more aspects of society. Results are reviewed with the objective of providing a fresh perspective on the potential means for addressing the current HIV epidemic.
That's a lot of clusters, and many of the suggestions have been around for a while. The import of the article, however, is that it gathers the opinions of so many together in one place to make the points that could lead us to fewer infections each year. These same experts appear to think we are missing the boat on funding, both in regard to the levels of funding directed at prevention and the objectives being set for that funding. (Yes, we knew that already, but this is another case of backing up the talking points with science.)
The empirical results suggest that individuals taking HAART have an increased likelihood of working and that individuals with private health insurance are more likely to use HAART compared to individuals with public health insurance coverage or no coverage.
The conclusions (emphasis added):
Due to the fact that employment of HIV-positive is directly related to HAART use, policymakers need to look to the private health insurance industry and public program to increase access to HAART. Suggested models for consideration are mandating insurance benefits and ADAP expansion.
I hadn't seen this study before, so it was good to have another talking point validated by the science. Sadly, there doesn't seem to have been much response from "policymakers" in the year since this study was published.
Thursday, April 13, 2006
My own negative results this week came with the discovery of Google's new calendar feature. I have been looking for something that would allow me to show posts to Texas AIDS Blog on a calendar, so this seemed like a good thing to try. It would be web-based. There is an option to make the calendar open to all. The interface allows for a monthly view, so that all posts for the month could be shown at once.
Sadly, when I tried to enter a few post titles, I found that I could not also enter hyperlinks. In both the comments box and in the description box, hyperlinks showed up as text but not as links. There was no way to turn a post title into an active hyperlink.
Could be that I just didn't understand the interface, but, still, I'm reporting negative results. I'll keep trying to find a solution. Your suggestions are welcome.
In the meantime:
Monday, April 10, 2006
Dwayne Haught (the manager) does this now and then, so it's not unusual nor overly concerning. It does concern us, however, when we ask about how much time the staff at the Texas HIV Medication Program is having to devote to the transition to Medicare Part D. It's a lot.
First there were the dual eligibles--people who were eligible for both Medicare and Medicaid whose income was at or below 100 percent of Federal Poverty Guidelines (FPG). These folks were "automatically" enrolled in Medicare prescription benefit plans and dropped from Medicaid coverage on January 1. Except, of course, they had to be returned to Medicaid support when the Medicare program became such a debacle. On April 1, they were shifted back to Medicare (as payor). Through all of this, the Texas HIV Medication Program stood fast: all clients were continued in the program until their status in Medicare Part D was clearly resolved. That often took several hours of staff time for each client; there were 1800 of these clients to be assisted.
Still it does not end for we also have "partial dual eligibles"--people who are eligible for Medicare and some (but not full) assistance from Medicaid whose income is at or below 130 percent and 150 percent of FPG. These folks were not automatically enrolled in Medicare. Instead they must choose the best plan for them, and they must do so by May 15.
There are several hundreds of these clients, and I am told that the number grows each week as THMP continues to identify eligible clients. Dwayne is in Fort Worth and the rest of the small staff at THMP are hustling on this because there are threats from HRSA (Health Resources Services Administration, the funding source for the Ryan White CARE Act) that all of the dual and partial dual eligible clients must be removed from ADAP programs on May 15.
Good for Positive Voices that they are working proactively to help their members meet that deadline. Here's the townhall info:
Thursday, April 13th
5:30 - 7:00 pm
Celebrations Community Church
908 Pennsylvania Avenue
All non- PVC members are asked to RSVP (for dinner count).
Today's email brings this notice from the Texas Health and Human Services Commission:
May 1: Fiscal Year 2008-2009 Legislative Appropriations Request Stakeholder Forum
That's it. No when, no where, no agenda. And the forum is not listed on their web site with other public meetings. This looks like "mark your calendar" to me. So mark your calendar.
The job is slowed down by finding such interesting things in the files (or out the files when they should have been filed [sigh]). A recent batch found me at the level of excavation that we can date around 1996-1997. Then, as now, we were looking forward toward the coming legislative session and appropriations that would be made for the next biennium. (Texas does two-year budgets.) Then, as now, we were faced with shortfalls in our HIV medications program and looking to the legislature to provide some relief.
For some reason I had, in my pack-rat ways, printed out and saved an email exchange from that time with an official in the state health department about the necessary appropriation. His replies were a virtual gold mine in their description of intradepartmental politics and the perpetual standoff between the state and federal governments.
Imagine, if you will, a situation in which virtually all levels of the state bureaucracy (in the stove pipe that would go from the then HIV Bureau to the highest level) were supportive of additional funding for HIV medications. Imagine that the metaphorical buck stopped at that highest level of the bureaucracy with an appointed official, not an elected official. And it was the appointed official who was required to face off against the federal appropriations process, to attempt to predict future appropriations cycles, and balance the need to fund the medication program against the need to convince the federal government that it was their responsibility to come up with the funds and not the state's.
That was the year that HIV was a footnote in the health department's legislative appropriations request. I recall having to work with that footnote as the primary support from the department for any increase in funding. It was also the year in which we first needed such major increases to fund the new medications that were to become so important to HIV therapy.
Several things ran through my mind in reading those emails: Bet that official wouldn't send such an explicit discussion of politics these days. Is it ironic or tragic that the life-saving breakthrough of protease inhibitors had to be a footnote in state funding? Gee, those were the good old days.
We face the same issues today: There are important new medications that we need to add to our formulary. How can we pay for them? Which of our pockets should the money come from (it being our money in each of our pockets)?
As it turns out, those were just old days, nothing to be nostalgic for. Maybe that's why being a pack rat is useful--there are plenty of reminders that the old days were just as tough as the new days. Of course, walking around the piles of files is not as easy as it was in the old days . . .
Friday, April 07, 2006
Think about the struggle that it is to keep your life on a rigid schedule so that you can remember to take your medications at the same time each day. Think about the panic that comes when you realize that you were so tired last night that you just fell asleep without taking the evening dose. Think about the awful taste in your throat as something, who knows what, seems to want to reassert itself. Think about having your world narrow to the fight that is going on in your bloodstream, a fight that dominates everything else that you might ever have cared about.
Then think about having your white blood cells reengineered to cut out a chunk of the HI virus before it gets a chance to replicate. Whack! Take that! And your viral load falls. And you don't have to take the meds any more because your blood just won the battle.
It's not a cure, but it's close enough for life to become ever so much sweeter.
Of course, at that point, you know I would start nagging about complacency and the need for ever greater vigilence in prevention. If this dream comes true--and Johnson and Johnson is apparently working hard to make it come true--anti-HIV ribozyme probably won't be cheap. That's not a dig at J&J; they are surely spending a bundle on the research right now. If the treatment is not cheap, then many people will not have access to it, just as many people do not have access to the medications that we use today. It's just a fact that no modern medical "miracle" is going to end the need for prevention.
But you're allowed to dream a little.
The Advocate's Notebook is intended to be a nuts and bolts approach to advocacy. I add a nut or a bolt now and then. This particular nut (or bolt) comes from the experience of sending out a newsletter with a list of talking points. The group of local advocates that I was working with had talked about the need to divide up the various points among several speakers so that there would be some variety in the speeches being made at the hearing they would be attending. The points were duly divided up; people had their topics and were ready to run with them. And then one of the dear people in the group got up to say his piece and simply read the entire list of talking points.
It was not, of course, the end of the world. We had to laugh at ourselves for being so intense in our preparations. Nonetheless, I'm thinking it doesn't hurt to have a little more explicit discussion of what talking points are and how they might be used available--just in case.
Wednesday, April 05, 2006
- I finally got rid of the tag cloud. It never seemed to do anything. Perhaps we'll have that bit of Web 2.0 some other day.
- I added a manual link to the blog's home page in the sidebar, since I managed to lose whatever automatic link had been there when I removed the tag cloud. Oopsie! If you decide to go exploring, you can always find your way home now by clicking on "Home." Original, no?
- I added links to the Tables of Contents that I created for the blog. These are posted on Texas AIDS Net with links back to each individual post. The TOC for 2006 is updated each month. Now you (and any wandering visitors) can click on the year's TOC, find a complete list of posts for that year, and pick and choose your reading without quite so much scrolling.
- I [proud look] made much use of the [center] command in the sidebar and [prouder look] rescued myself from several instances of open commands, including, sadly the [center] command. Well, trial and error worked on the VW, too, y'know.
No doubt there will be more tinkering later on. A woman's work is never done . . .
I'm wavering between "no comment" and [chortle]. Not that I have anything against viatical settlements. I remember when they were a lifesaver, so to speak, for people who desperately needed the money and who had little hope of living more than a year or two longer.
I also remember the wonderful days when people began to get better, when folks who were literally on their death beds suddenly wondered "What's for dinner?" and then got up to fix it.
"No comment" would be the most discreet reaction, I'm sure, but I can't help chortling with delight that so many of the folks who made those settlements are still with us. We are all richer for that.
While it's sometimes a stretch to make the connection between the workings of U.S. foreign aid and Texas concerns, stretching is good exercise. So follow along with me a bit.
The GAO report is talking about the U.S. requirement being placed on the use of its funds that ABC be the focus of prevention efforts. ABC is Abstinence, Be Faithful, Use a Condom. The problem is that at least a third of the funds used for prevention must be used for abstinence. While "abstinence" is being interpreted to mean both A and B, it still doesn't include C. That can be tough in countries where the epidemic is concentrated among sex workers and IDUs or where the average age of first sexual contact is 20. That means that millions of dollars are being spent to promote abstinence when condom promotion or cleaning up the blood supply or ensuring safe medical practices or preventing mother to child transmission is more appropriate for the local situation.
Some of the emphasis comes from congressional mandate. Some of it comes from administrative policy. All of it represents either cultural blindness or lack of concern for facts on the ground.
So here comes the stretch. You may have noticed the sad trend (flat or downward) in federal appropriations for the Ryan White CARE Act over the past few years. You may also have noticed the steady increase in appropriations for abstinence only education. How much of a stretch is it to think that these two trends will at some point converge and we will face the same problems in Texas that are being documented for Africa?
Tuesday, April 04, 2006
The Coalition on Human Needs is providing a toll free number (800-459-1887) for you to use to call your member of Congress. Your message could be something like:
I am calling to urge Rep. __________ to vote against the budget resolution if it forces cuts in nutrition aid, health care, education/training, housing, and other essential services. If the funding is as low as the President's budget, vulnerable people, from infants to the elderly, will lose needed services. Please do not sacrifice these essential priorities for tax breaks that favor the rich.
Several Texas members of Congress will have key roles to play in budget and appropriations activities, but they all need to be contacted by their constituents at this critical point in budget discussions.
Monday, April 03, 2006
Indeed, they need to hear from you. Today's news is all about how election year politics (not actual fiscal policy) is affecting the budget resolution for FY 2007, i.e., how much of our tax dollars will Congress spend next year? (All of 'em, of course. Duh!) Some folks (not naming names here) want to cut spending, since we're in such a hole with the deficit. Some folks (no names here either) whacked the stuffing out of "social programs" (as in "safety net," "most vulnerable populations," "people too sick to lobby and too poor to pay for lobbyists") in the last few budgets, so maybe they should worry that this might affect their re-election chances so maybe Congress should make the deficit a little bigger to help them out by making them look all compassionate (fill-in-the-blank).
Here's a tidbit (and I do mean tidbit, since there's a lot more where this came from) from a recent letter sent to Congress from the AIDS Institute (formatting applied, emphasis added):
Election year politics? Deficit? This is simple arithmetic, people. Y'know how much we need, y'know how much we have. The only thing you don't know is how much you need to get in order to meet the need. Can you spell s-u-b-t-r-a-c-t-i-o-n?
Ryan White CARE Act
FY 2005: $2,073 million
FY 2006: $2,063 million
FY 2007 President’s Request: $2,158 million
FY 2007 Community Request: $2,648 million
The centerpiece of the federal government’s response to caring and treating low-income individuals with HIV/AIDS are those programs funded under the Ryan White CARE Act. CARE Act programs currently reach over 571,000 low-income, uninsured, and underinsured people each year, most of who are from a racial or ethnic minority group. The majority of CARE Act funds support primary medical care and essential support services.
Providing care and treatment for those who have HIV/AIDS is not only the compassionate thing to do, but it is cost-effective in the long run, and serves as a tool in prevention of HIV/AIDS.
In recent years, with the exception of minor increases for the AIDS Drug Assistance Program (ADAP), CARE Act funding has decreased. Because of across the board recessions, flat funding has actually resulted in budget cuts for the past several years. We urge you to provide these vitally important programs with the community requested level of funding. Consider the following:
1) The caseload is increasing. People are living longer with HIV/AIDS due to lifesaving medications; there are 40,000 new infections each year; and the federal government has initiated increased testing programs to identify positive people-all of which will necessitate the need for more medical services and medications.
2) There is a greater financial burden on CARE Act programs. The price of healthcare, including medications, is increasing; non-profit organizations are struggling; Medicaid benefits are being scaled-back at the state level and significant Medicaid reductions recently passed the Congress.
3) Level or decreased funding for the CARE Act is impacting state and local governments grant awards. Because of reduced funding levels, 34 out of the 51 largest cities affected by HIV/AIDS experienced cuts to their Title I awards this year. This is after 18 cities experienced cuts last year. Additionally, 41 states and territories received less money last year in their Title II base awards.
4) ADAP funding shortfalls are causing states to place clients on waiting lists, limiting drug formularies, and increasing eligibility requirements. In February 2006, nine states reported having waiting lists, totaling 791 people. Several ADAPs reported other cost containment measures, including formulary reductions (4), eligibility restrictions (2) and limiting annual client expenditures (2). Due to the small increase the ADAP program was given last year, additional severe restrictions are anticipated in many additional states across the country.
5) Two recent reports conclude there are a staggering number of people in the U.S. who are not receiving life-saving AIDS medications. The Institute of Medicine report “Public Financing and Delivery of HIV/AIDS Care, Securing the Legacy of Ryan White” concluded that 233,069 people in the U.S. who know their HIV status do not have continuous access to Highly Active Antiretroviral Therapy (HAART). A study by the CDC titled, “Estimated number of HIV-infected persons eligible for and receiving antiretroviral therapy, 2003-United States”, reached similar conclusions. According to CDC’s estimates, 212,000, or 44% of eligible people living with HIV/AIDS, aged 15–49 in the U.S., are not receiving antiretroviral therapy. The report concludes, “there is a substantial unmet health care need for antiretroviral therapy among HIV-infected persons in care”.
This is a travesty in our own country. As we seek to provide lifesaving medications to those abroad, we must ensure we are providing medications to our own here in the U.S.
OK, so I'm not all nice and fluffy. I tried. April is gonna be like this.