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.