Thursday, September 30, 2004

Status of federal HIV/AIDS appropriations

The U.S. government is operating under a continuing resolution through November 20.

On July 15, the U.S. House passed the Labor, HHS, Education appropriation bill for FY 2005. According to a committee press release, the following appropriations were recommended by the House for medical research and health programs:

  • Centers for Disease Control funding is $4.48 billion, $101 million below last year and $15 million above the budget request.
  • Community Health Centers are expanded - fourth year of the President’s proposed expansion of health services through the Community Health Centers Program. Total funding $1.8 billion, $219 million over last year and the same as the President’s request.
  • National Institutes of Health continues our commitment to the NIH by providing $28.5 billion, $727 million more than last year.
  • International HIV/AIDS, TB and Malaria programs are funded at $ 624 million, the
    same as the President’s request.
  • Infectious disease- Enhances CDC’s resources for preventing and controlling emerging infectious disease threats, such as SARS, West Nile Virus, and Monkeypox. ($ 398 million - +$ 29 million)
  • Homeland Security/Biodefense programs are supported at $ 1.694 billion in NIH, $1.638 in CDC and $543 million in hospital preparedness.
  • Ryan White AIDS program is increased by $35 million over FY04 with total funding of $2.1 billion.
  • Children’s Graduate Medical Education (GME) is funded at $303 million, the same as the President’s request and roughly the same as last year.
  • Low Income Home Energy Assistance Program (LIHEAP) is funded at $2.2 billion, an increase of $122 over last year.
  • Faith- and Community-Based Initiatives are increased including the Compassion Capital Fund at $55 million.
  • Abstinence- Provides $110 million for the discretionary abstinence education program, an
    increase of $35 million over FY04.
  • Social Security - Provides a 6% increase to the Social Security Administration to improve service delivery of Social Security benefits and accelerate the time it takes to process disability claims.
On September 15, the Senate Appropriations Committee voted out its bill for Labor, HHS, and Education. The committee provides the following highlights of appropriations for HHS programs:

  • Community Health Centers -- $1.867 billion, which is $31 million above the request and $250 million over last year. These centers provide critical health care services to underserved and uninsured people throughout America.
  • Pediatric Graduate Medical Education -- $303 million, the same as the President’s request.
  • Health Professions – The bill includes $465 million for Health Professions programs, which restores many of these programs which were eliminated in the President’s budget.
  • National Institutes of Health -- The Senate bill includes $28.9 billion, an increase of $1.1 billion over the FY’04 appropriation and $380 million over the President’s budget request.
  • Centers for Disease Control & Prevention -- The Senate bill includes an increase of $345 million over the budget request, for a total of $4.8 billion.
  • Pandemic Flu --The bill includes $75 million in new funding to ensure that an adequate supply of vaccine would be available in the event of a severe flu outbreak.
  • Global AIDS -- The bill includes $660 million for global HIV/AIDS activities. Within this total, $149 million is included for the Global Fund for HIV/AIDS/TB, which is $50 million over the budget request and the same as last year. In addition, $118.8 million is included in CDC for global HIV/AIDS/TB activities.
  • Family Planning -- $308 million, an increase of $30 million over the budget request and $30 million over FY’04.
  • Low Income Home Energy Assistance Program (LIHEAP) -- The Senate bill includes $2 billion for LIHEAP, the same total as the budget request. Of the funds provided $99.4 million was included for the contingency emergency fund.
  • Ryan White AIDS Programs -- $2.080 billion for the Ryan White AIDS programs, $35 million more than last year's budget.
  • Family Caregivers -- The Senate bill includes $157 million for family caregivers, an increase of $4.3 million above last year.
  • Head Start -- $6.935 billion for Head Start, an increase of $160.5 million over last year.
    Abstinence Education Programs -- $138 million, an increase of $36.5 million over the FY’04 appropriation.
  • Substance Abuse & Mental Health Services -- The bill provides $3.5 billion, an increase of $133.8 million over last year. SAMHSA is responsible for supporting mental health programs and alcohol and other drug abuse prevention and treatment services throughout the country.

If I read the congressional table giving the status of appropriations correctly, the full Senate has not yet voted on this appropriations bill, so the issue has not yet gone to conference committee. It makes sense, then, point out that $35 million for the Ryan White CARE Act will not cut the mustard.

The National Organizations Responding to AIDS (NORA) recommends a $217 million increase in funding for AIDS Drug Assistance Programs (ADAPs) alone. But there are other needs for funding in the Ryan White CARE Act, including early intervention services, case management, etc. The appropriations process for FY 2005 is pretty far along to have much of an impact on the final numbers we can expect out of the conference committee (and there is no disagreement about those numbers so far between the House and the Senate anyway), but it's still worth it to let our representatives in Congress know what is being missed in this appropriation cycle.

The new federal appropriation cycle gets underway in February, 2005.


NYT Supports Reimportation

The New York Times editorial page opines that it's high time that the Senate majority leader, Sen Bill Frist, allow a vote on a bill that would allow reimportation of drugs from Canada.



September 29, 2004
The Senate's Chance on Drug Costs

If Dr. Bill Frist, the Senate majority leader, knows what's good for the body politic, he will allow a quick floor vote on the drug reimportation bill he has been bottling up for the benefit of President Bush and the pharmaceutical industry. A large majority - up to 75 members, by some estimates - would easily pass the bill and delight the organized older voters who have been clamoring for lower-priced Canadian drugs. American consumers are increasingly aware that their average drug prices are 67 percent higher than what Canadians pay for comparable prescriptions. Bipartisan Senate pressure is growing on Dr. Frist, along with threats of the sort of floor rebellion that saw the Republican House rise up last year to pass a drug reimportation plan over Mr. Bush's opposition.

Mr. Bush continues to express concern about potential safety risks from imported drugs while insisting that the new Medicare subsidy for prescription drugs will eventually ease the pocketbook pain of dissatisfied retirees. Dr. Frist also continues to express concern about the need to weigh the benefits of lower prices against possible safety risks.

But this concern is addressed in the pending bipartisan bill, which mandates that the bargain drugs would come from licensed Canadian pharmacists and wholesalers registered with the federal Food and Drug Administration. [emphasis added.]
The Times joins an increasingly large bandwagon that supports the reimportation of U.S. manufactured drugs from Canada, because Canada's universal health care program has negotiated (or mandated) lower consumer prices for these drugs. Regardless of the politics involved, the U.S. Food and Drug Administration has--for years--expressed concerns about the importation of drugs from foreign sources, including the reimportation of U.S. manufactured drugs. (The pharmaceutical industry seems only lately to have jumped on the bandwagon, presumably for their own reasons.) Moreover, Congress has already passed laws allowing for reimportation if the safety concerns can be addressed.

If this bill does indeed address the safety concerns, then reimportation may become a viable--and safe--alternative to the high costs of medications in this country. However, setting standards for safety will not be enough if the FDA is not also given adequate funds for inspections and the personnel to conduct them. FDA must also be given authority to prohibit certain pharmacies from doing business with U.S. customers if their activities are deemed unsafe.

The bill in question appears to be S.2137, which has sponsors from both parties and a version of which has already passed the House as HR.2427. S.2137 is called the "Pharmaceutical Access Act of 2003." It has passed on second reading and now sits on the Senate calendar, awaiting action.

The bill lists some interesting findings (note the repetition of findings on safety):
Congress finds that--
(1) Americans unjustly pay up to 1000 percent more to fill their prescriptions than consumers in other countries;
(2) the United States is the largest market for pharmaceuticals in the world, yet American consumers pay the highest prices for pharmaceuticals in the world;
(3) an unaffordable drug is neither safe nor effective;
(4) allowing and structuring the importation of prescription drugs ensures access to affordable drugs, thus providing a level of safety to American consumers that consumers do not currently enjoy;
(5) according to the Congressional Budget Office, American seniors alone will spend $1,800,000,000,000 on pharmaceuticals over the next 10 years; and
(6) allowing open pharmaceutical markets could save American consumers at least $635,000,000,000 each year.
The purpose of the bill is stated to be:
(1) to give all Americans immediate relief from the outrageously high cost of pharmaceuticals;
(2) to reverse the perverse economics of American pharmaceutical markets;
(3) to allow the importation of drugs (excluding pharmaceutical narcotics) only if the drugs and the facilities in which the drugs are manufactured are approved by the Food and Drug Administration; and
(4) to require that imported prescription drugs be packaged and shipped using counterfeit-resistant technologies approved by the Bureau of Engraving and Printing, similar to the technologies used to secure United States currency.

Another Senate bill (S.2307) on the same subject has only one sponsor (Sen. Grassley) and has been referred to committee. This bill is much broader and includes financial incentives for "taxpayers" not to oppose reimportation from foreign supplies.





Additional Information

We've now added a blogroll, or list of links, under the heading called "Additional Information." As we discover and get to know other sites, especially other blogs, we'll be adding them to the list.

At the top of the list, of course, is Texas AIDS Network's own website. If you didn't arrive at this blog through the website, we hope you'll visit the site to learn more about the programs and activities of the Network.

A comparatively new AIDS blog is AIDS Matters. This blog was established in March and is a project of Forum One Communications. Jim Cashel and staff members of Forum One run the blog. AIDS Matters is described as a web resource for global AIDS professionals. The blog includes recent articles about AIDS funding, international discussion boards, media coverage of the global pandemic, and other stories about the big picture.

Developing . . . as they say.

Wednesday, September 29, 2004

HIV and Poverty

The good folks at the Kaiser Family Foundation provide a daily collection of HIV/AIDS-related news summaries, called the "Daily HIV/AIDS Report." In addition, KFF provides daily reports on health policy and reproductive health.

Today's report includes a brief summary of an opinion piece in the Lancet. In the essay, Lynda Fenton talks about the link between HIV and poverty. She suggests that poverty itself is a co-factor in HIV infection, since persons living in poverty often have poor access to health care and often suffer from malnutrition. The ill effects of poverty on health can break down the body's defenses against HIV.

Fenton talks about the cycle of the epidemic, beginning with folks who have greater economic means, who contract and then spread the epidemic because of their ability to travel. However, since greater economic means often correlates with better educational opportunities, at some point these same groups of folks are in a better position to receive information about HIV and its prevention. Poor folks, on the other hand, are in a worse position to receive those messages, and so the epidemic concentrates in that population.

Fenton was talking about the cycles and causes of the global pandemic and thinking in terms of whole countries, and she was careful not to limit her concept of the root causes of the epidemic to poverty alone. However, there is some value in applying her thoughts to the situation in the U.S.

We talk about the changing face of AIDS because the new infections, while still largely occurring in the gay community, are rapidly increasing among women and people of color in this country. There are statistics all over the place that correlate women and people of color with poor access to health care and lower quality education, especially when combined with poor economic circumstances. It is reasonable to ask whether HIV infection in the U.S. correlates in these populations with those circumstances.

Fenton makes two policy recommendations: (1) end poverty, but (2) don't neglect effective prevention efforts while you're ending poverty.

That sounds like a good plan, even in the U.S.

Tuesday, September 28, 2004

The war on condoms

The War on Condoms is rather more like a campaign in the larger War on Science now being waged in the United States. HIV/AIDS prevention relies, in part, on correct and consistent use of condoms, and can be seriously undermined if doubts about the effectiveness of condoms encourages people to opt for unprotected sex.

The latest issue of Science includes an opinion piece about the current state of science and public policy at the U.S. Centers for Disease Control:


Scientific Decisions, Including HIV/AIDS Policies, 'Subjected to Political Tests' by Bush Administration


The scientific community -- both in the United States and abroad -- has "expressed concern" over the fact that scientific decisions, including those concerning HIV/AIDS policies, are "subjected to political tests" by the Bush administration, David Baltimore, president of the California Institute of Technology, writes in a Science opinion piece.

The administration's "pattern of behavior ... is becoming clear," including its "abandon[ment]" of scientific rationale in favor of political policies influenced by "religious conservatism or economically based political caution," Baltimore says. Current U.S. HIV/AIDS policy is a "case in point," Baltimore says, adding that "[s]topping the spread [of HIV/AIDS] should be the highest international priority," because the disease is spreading at an "alarming rate" in Africa and Asia.

However, the Bush administration has prioritized abstinence as the most effective method of HIV prevention and has given "scant recognition to the protective value of condom use," despite the fact that "under most circumstances the only safe and effective protection is condoms," Baltimore says.

Although "complaints" led CDC to include a "positive statement" about the effectiveness of condoms in an online fact sheet and USAID now promotes condom use, the administration does not promote widespread use of condoms in HIV prevention, according to Baltimore.

Although complaints from the Union of Concerned Scientists and other individuals in the field have resulted in a "new posture" in the administration that is more "honest" about scientific facts, the implications of policy decisions are "still being ignored," Baltimore writes, concluding, "Our goal now should be to have the policies track the science" (Baltimore, Science, 9/24).

The War on Condoms is not just being fought abroad. There are battles in the U.S., as this excerpt from Scientific Integrity in Policymaking notes:

Cases: Public Health
Scientific Knowledge on HIV/AIDS Prevention Distorted

At the instigation of higher-ups in the George W. Bush administration, fact-based information on the Centers for Disease Control's (CDC) website has been altered to raise scientifically questionable doubt about the efficacy of condoms in preventing the spread of HIV/AIDS.

A fact sheet on the CDC website that included information on proper condom use, the effectiveness of different types of condoms, and studies showing that condom education does not promote sexual activity was replaced in October 2002 with a document that emphasizes condom failure rates and the effectiveness of abstinence.52 When a source inside the CDC questioned the actions, she was told that the changes were directed by Bush administration officials at the Department of Health and Human Services.53

[Footnote]52. A. Clymer, “U.S. Revises Sex Information, and a Fight Goes On,” New York Times, December 27, 2002. A comparison of the two versions of the CDC website about condoms can be seen online. The original website, CDC, Condoms and Their Use in Preventing HIV Infection and Other STDS (September 1999) is available at [broken link]; the current CDC fact sheet, CDC; Male Latex Condoms and Sexually Transmitted Diseases (October 2003) is available at www.cdc.gov/nchstp/od/latex.htm.

[Footnote]53. Author interview with current CDC staffer, name withheld on request, November 2003.

We've also noted here that the CDC is changing some of its policies regarding contract guidelines for prevention education. This will bring the War on Condoms down to the local level.

Not that we're not used to the War on Science in Texas. Any time the State Board of Education considers new textbooks, another battle (also here, here and here) ensues.

But here's the deal.

According to the Texas Department of State Health Services, on December 31, 2003, 48, 368 Texans were living with HIV or AIDS. In 2003, 4,802 new cases of HIV were reported. That's more than 13 new cases each day. In addition, 3,689 cases of AIDS were reported. While those reported cases showed a decline between 2002 and 2003 in the number of new infections by means of male-to-male sex, there was a slight increase in the number of new infections by means of heterosexual sex. The number of new HIV infections by means of heterosexual sex is comparatively low; however, they still constituted about 30 percent of new infections in 2003.

Moreover, talking about HIV infections doesn't include the other sexually transmitted infections that could have been prevented by correct and consistent use of condoms nor does it include the fact that Texas has the highest teen pregnancy rate in the nation.

The domino effect of the War on Condoms affects quality of life for families, not just individuals. It ultimately affects the cost of health care to the state and community, which translates to increased pressure on property and other taxes. For want of a nail, the shoe was lost . . .

Monday, September 27, 2004

Mapping the News

When I want to see what's occupying news "space," the newsmap is a graphical representation of current news stories (within the past hour) and how much attention is being given to each story. Health and technology seem to get the least "space" in the world of news; 6 times as much "space" is occupied by world news, national news, and sports.

Here's the AIDS-related story that is currently showing up on the news map: "The face of global AIDS," originally written by Kathleen Ingley of the Arizona Republic. Another 60 stories in U.S. media are based on this one, and no other AIDS-related story is currently showing on the map.

In a way, that might be good news. After all, any AIDS-related story would be helpful in maintaining public awareness that AIDS isn't over. As is often the case these days, however, this story focuses on the international crisis (a good thing) while implying that we have AIDS under control in the U.S. (not necessarily so). Here's what Ingley says:

We don't have a cure yet for AIDS, and a vaccine is years away.

But we know how to prevent this deadly disease. We have the medicines to treat it, keeping infected people healthy and prolonging their lives.

That has given us a handle on HIV/AIDS in the United States. The number of new infections has leveled off - although at 40,000 a year, it's still way too high.

Treatment with anti-retrovirals, which suppress the virus, is widely
available, and people have lived with the disease for years.

So it's easy to forget what a frightening global threat we're facing.

It's not that she's so wrong. It's just that she's so comfortable with the state of the epidemic in the U.S. We have to give her credit for noting that 40,000 new infections in the U.S. each year is "way too high." It is. However, there are still people (in the U.S.) who cannot afford those lauded HIV medications. Those medications are not a cure. They're not a picnic to take, either. The system which should be helping folks with lower incomes find access to those medications is complicated and flawed. Prevention efforts are continually hampered by right wing politics.

There's nothing comfortable about the AIDS epidemic in the U.S.

Ask the candidates about ADAP

Bill Arnold at TIICANN tells us that the public may submit questions to be asked during the presidential debates. He encourages us to submit questions about the AIDS Drug Assistance Program. You can submit your question through the link shown above.

The Cost of War in the Fight against AIDS

Today's newsletter from the National Council of Churches includes a link the the National Priorities Project and its website on the cost of war, referring to the cost of the War in Iraq. The site says:

War affects everyone, not just those directly involved in the fighting. This webpage is a simple attempt to demonstrate one of the more quantifiable effects of war: the financial burden it places on our tax dollars.

To the right you will find a running total of the amount of money spent by the US Government to finance the war in Iraq. This total is based on estimates from Congressional appropriations. Below the total are a number of different ways that we could have chosen to use the money. Try clicking on them; you might be surprised to learn what a difference we could have made.
The running tally of the war's cost is like a clock with a fast display of the seconds. The numbers almost go by in a blur. But what the site says about the AIDS epidemic is startling:

Instead [of paying for the war], we could have fully funded world-wide AIDS
programs for 13 years.

Texs AIDS Network adds that a mere $217 million of that $137 billion would fund ADAP programs in the US in the new fiscal year that begins on October 1.

Friday, September 24, 2004

DSHS (formerly TDH) Legislative Appropriation Request

The Texas Department of Health became the State Department of Health Services on September 1. The department's new web address is: www.dshs.state.tx.us.

Background information for the DSHS Legislative Appropriation Request (LAR) is posted at:
http://www.dshs.state.tx.us/lar/default.shtm. This information is somewhat out of date, since it only reflects materials presented at the July 20 hearing.

The next hearing scheduled on the LAR is October 1 at 9:00 a.m. in Austin at the John H. Reagan Building (105 W. 15th Street), Room 140. This hearing will be held by the Legislative Budget Board (LBB).

After that, the LBB will hear the budget request for the Health and Human Services Commission (October 6, 9:30 a.m., Capitol Extension, E2.028, Austin). The DSHS budget will be part of the combined budget for all agencies in the HHSC.


Thursday, September 23, 2004

In the news

A study in the September issue of Brain looks at damage to dopamine receptors, pointing toward potential new ways of treating or preventing HIV dementia. See these stories for more information:


Researchers at Washington University studied the effect of ritonivir in preventing osteoporesis in HIV positive men. Their results are published in The Journal of Clinical Investigation. For more information, see the following press release:


New CDC regulations are likely to affect HIV prevention by muddying the discussion of condom use and requiring another (chilling) layer of review for explicit prevention messages. See these news stories for more information.



Hoaxes and Rumors at CDC

Navigating the CDC website, looking for specific information, is no easy task these days. While looking for something else, however, I stumbled across the CDC's page on hoaxes and rumors. A surprising number of them are related to HIV transmission (the infamous needle in the theater seat, airborne transmission, and so on).

A lot of these hoaxes and rumors are spread by email. If you should receive one of these helpful missives, the CDC has a page devoted to debunking the rumors: CDC Health-Related Hoaxes & Rumors.

Wednesday, September 22, 2004

Letters needed to protect PWAs with Medicare/Medicaid

The Access Project has sent the following message with a request to distribute widely. The message requests response from individuals.

Please help distribute widely.
HIV Medicare and Medicaid Workgroup (HIVMMW) Action Alert
Letters Needed Now to Protect PWAs with Medicare/Medicaid
Letters and Online Comments Due October 4th

Do you know that roughly 60,000 PWAs might lose their comprehensive prescription drug coverage in 2006, when the new Medicare Rx benefit comes into effect?

According to regulations being drafted, Medicare recipients will no longer be allowed to rely on Medicaid for their prescription drug coverage. Instead, they will be forced into the new Medicare Rx plans with limited drug coverage. These plans are not required to provide all FDA approved antiretroviral drugs.

PWAs who have both Medicaid and Medicare are long time survivors, who are treatment experienced and likely to have drug resistance problems. A massive and united response is needed to keep their treatment regimens effective.

The Centers for Medicare and Medicaid Services (CMS), the federal agency that oversees Medicare, is requesting comments on the draft regulation. We need a massive and united response to make sure that people with HIV/AIDS receive protections in the final regulations.

Please take some time to be a part of this response! A sample letter has been provided for your use and personalization. Written comments can be made either online or through the mail.

To submit comments online, go to http://www.cms.hhs.gov/regulations/ecomments/. If you make comments online, please send a copy of these comments to rclary@projectinform.org, so we can track the community response.

To submit comments by mail, please mail or fax the letter to the address/fax below no later than Monday, September 27th. The federal government is requesting two copies of all comments. We will make all copies and mail the letters.

Send letters to:
Ryan Clary
c/o Project Inform
205-13th Street, #2001
San Francisco, CA 94103
FAX: 415-558-0684

Sample Letter:

Feel free to cut and paste this letter. Add your name and contactinformation at the bottom. If you can, please add a personal message. This is especially important if you receive Medicare benefits. The federal government needs to know how this bill will affect people's lives.If you need any help crafting your message, please contact Ryan Clary at rclary@projectinform.org.

Centers for Medicare and Medicaid Services
Department of Health and Human Services
Attention: CMS-4068-P
P.O. Box 8014
Baltimore, MD 21244-8014

To Whom It May Concern:

I am responding to the proposed rule "Medicare Program; Medicare Prescription Drug Benefit," 69 FR 46632. I am concerned that the current rule does not provide sufficient protection for people with HIV/AIDS who will receive their treatment through this benefit.

CMS must designate people living with HIV/AIDS as a "special population" and ensure that they have access to an open formulary of prescription drugs and access to all medications at the preferred level of cost-sharing. This would ensure that HIV-positive individuals would have affordable access to all FDA-approved antiretrovirals, in all approved formulations, as is recommended by the Public Health Service HIV treatment guidelines.

[INSERT PERSONAL STATEMENT HERE. If you are on Medicare, talk about how these regulations will affect you. Otherwise, write a couple of sentences about the need for people with HIV to have full access to treatment, regardless of ability to pay.]

Thank you for considering my comments as you finalize the regulations.

Sincerely,
Your name
Your address

The HIV Medicare and Medicaid Workgroup is a coalition of national, state and local AIDS advocacy organizations, community groups, healthcare providers, and universities committed to ensuring that people living with HIV/AIDS have access to appropriate, cost-effective health care and drug treatment. The HIVMMWG is an affiliated working group of the Federal AIDS Policy Partnership. The working group is committed to protecting and expanding coverage for people living with HIV/AIDS under Medicare and Medicaid.

Price Freeze for ADAP

The Access Project has sent the following letter and encourages wide distribution. The letter is seeking responses from organizations. Individuals may wish to call this letter to attention of any organizations to which they belong.

Dear Friends,

The AIDS Treatment Activists Coalition is asking for your support in calling for a price freeze on domestic HIV and hepatitis C drugs. Escalating drug prices have long been a contentious issue, but the situation has reached crisis levels. Over the past two years, much of the hard won increases in federal funding have been consumed by a rush of new drug price increases. These price increases represent hikes in the price of existing generations of drugs, rather than the cost of new and better drugs. We must come together to preserve drug access for HIV+ people in this country.

As we write:
  • More than 1600 people across the country are on ADAP waiting lists.
  • Medicaid programs are facing cuts across the country.
  • New Medicare Rx Plans will likely provide inadequate coverage for people living with HIV/AIDS, along with high cost sharing for people living on fixed incomes.
  • Private insurance premiums and co-pays are going through the roof.

Please take a moment and read the letter below. We are seeking Organizational sign-ons only.

To sign-on, please send the following information to JCurry819@yahoo.com The deadline for sign-ons is October 8th.

Organization:
Contact Person:
Address:
City/State/Zip:
Phone:
e-mail:

For an explanation of the price freezes, and additional background about the history of drug price increases, please go to http://www.atac-usa.org/price.html#ceo

THE DEAR CEO LETTER TO THE COMPANIES:

Dear CEO _____________________,

As people living with HIV, advocates, and members of a community whom you have considered allies in the fight against HIV and hepatitis C, we are writing to say the time has come for a drastic change in your company’s drug pricing practices in the United States.

Two years ago, the Fair Pricing Coalition wrote to companies, requesting a two-year price hold on all HIV medications. Some companies complied, while others did not. Since then, the escalating cost of drugs—and the consequent deleterious effects on the healthcare system—has become front page news. Congress is considering legislative options to control the cost of prescription drugs. Public opinion polls increasing point to big pharmaceutical companies as a primary cause of skyrocketing healthcare costs.

Instead of heeding public opinion by maintaining current prices, many companies have chosen to end price holds to the HIV/AIDS community and have raised prices once again—despite already healthy returns on product investments. Since 2003, the following companies have implemented price increases without prior warning:

BMS: 4.8% on all HIV drugs, including Reyataz (8/03 FDA approval)

GSK: 4.9% on all HIV drugs, including Lexiva (10/03 FDA approval)

Merck: 4.9% on Crixivan

Abbott: 400% on Norvir

BI: 16.5% on Viramune

Gilead: 14.6% on Viread

Roche: 5.2% on Fortovase

In addition, new drugs introduced since the price freeze two years ago continue to drive up the overall costs of HIV treatment. The inescapable conclusion is that industry revenues are maximized at the expense of the sick and the poor.

If this upward spiral continues, it will place increasing burden on public healthcare programs that provide access to treatment and care. In the last two years, Medicaid, the largest payer of HIV care, has faced unprecedented attempts to restrict funding, limit benefits and coverage at the state and federal levels.

The AIDS Drug Assistance Program (ADAP), a vital and unique safety net for uninsured HIV-positive people, has suffered severe under-funding for the last four years with no relief in sight. As a result, many state ADAPs find themselves in crisis, and are imposing such restrictions as reducing the number of covered drugs and capping monthly dollar amounts per person. Some programs are considering paying for only the lowest priced drugs. As we write, there are more than 1600 people on ADAP waiting lists across the country.

People with private insurance are experiencing soaring premiums, increases in co-pays, and the threat of lifetime caps on drug benefits. The number of uninsured persons is rising. Nevertheless, your industry continues to increase its prices—and resulting profits. These price increases are perhaps worst for those with no prescription drug coverage at all. Few can afford the cost of a complete combination therapy regimen, even if they buy drugs from pharmacies outside the U.S. or utilize other discount options.

When people with AIDS cannot access the benefit of antiretroviral therapy, they eventually become sick with opportunistic infections and related complications. Members of our community have died while on ADAP waiting lists. We will see the death toll rise as the number of people unable to access lifesaving medication grows.

Historically, the HIV/AIDS community has successfully collaborated with the pharmaceutical industry to speed the drug approval process and to secure sufficient government funding for both research and treatment. No other disease community enjoys the respect, support, and open communication that has characterized our relationships with industry. However, we now find ourselves in a situation where our hard fought successes in achieving even minimal government funding increases are quickly devoured by pharmaceutical price increases. Our collaborations with industry work against us in an increasingly more difficult economic and legislative climate. It is unconscionable that drugs discovered and tested in the United States are unaffordable to increasingly large numbers of people in our country.

As members of the communities affected by HIV and hepatitis C, we make the following simple request in the strongest possible terms:

Announce an immediate, permanent price freeze for all payers on all FDA-approved antiviral treatments for HIV and hepatitis C. This must include a real net cost freeze on all ADAP-covered drugs, for all ADAPs, beginning immediately.

We look forward to your prompt response to our request. Please direct all response and communication to:

Jen Curry, AIDS Treatment Activist Coalition

(212) 213-6376, x.33,mailto:JCurry819@yahoo.com

Signed,

AIDS Treatment Activist Coalition,

Save ADAP and Drug Development Committees

[List in formation]


Tuesday, September 21, 2004

National Latino AIDS Awareness Day

Visit the NLAAD site for more information.

The National Organizing Committee for National Latino AIDS Awareness Day 2004 (NLAAD 2004) invites non-profit organizations, persons with HIV/AIDS, governmental organizations, media outlets and businesses to join in the effort to develop awareness, promote prevention and build leadership around HIV/AIDS issues in Latino communities nationwide. This year's event will be held on October 15, the first day of National Hispanic Heritage Month. The theme for this year's event is Abre Los Ojos: El VIH No Tiene Fronteras (Open Your Eyes: HIV Has No Borders). The National Organizing Committee for NLAAD 2004 has set aside October 15, 2004 as the day in which they will renew their commitment to ending the spread of HIV/AIDS, and make the rest of the country "open their eyes" to the rapidness of this disease in Latino communities. NLAAD 2004 also will focus on confronting the stigma associated with HIV/AIDS, and ensuring a better quality of life for those with HIV-regardless of their Spanish speaking country of origin or immigration status.

HOW TO PARTICIPATE

The ways in which to participate in promoting awareness within the Latino HIV/AIDS communities on October 15 include:

  • Becoming part of the National Organizing Committee and help to shape the national profile of our efforts and participate in established committees. All meetings are conducted through conference calls;
  • Organizing an event in your locality for HIV/HCV testing, vaccine awareness, elected official participation, cultural expressions, health awareness, etc.;
  • Registering your event with NLAAD for inclusion on national calendar; and
  • Forming a local organizing committee to plan events in your city with sister agencies.
REGISTRATION AND ADDITIONAL INFORMATION

Participation starts with registration. Click here to complete a registration form online, or visit the NLAAD website for more information. For more information, contact the Latino AIDS Commission directly:

Latino Commission on AIDS
24 West, 25th Street, 9th Floor
New York, NY 10010
Telephone: (212) 675-3288
Fax: (212) 675-3466

Monday, September 20, 2004

Here we go!

After some delay, Texas AIDS Network is pleased to begin a new blog for the Texas HIV/AIDS community. We define the Texas HIV/AIDS community to be anyone who is affected by HIV/AIDS--whether personally, socially, or professionally--in Texas. The purpose of this blog is to present news and information as it becomes available. Whenever possible and appropriate, commentary and analysis will be presented in order to place the news/information in context.

Comments are welcome--and encouraged. While we are allowing anonymous comments on the blog, commenters are encouraged to create a user name that will allow us to distinguish among the commenters. (If spam becomes a problem, we'll shift to requiring registration, but we hope that that won't happen.)

To be successful, this blog will need to be a team effort. If you are interested in becoming part of the team, please contact us.