HIV meds program on state’s chopping block

Ending assistance could cost communities millions in added ER care and hospitalization, advocates say

DAVID TAFFET | Staff Writer
taffet@dallasvoice.com

Some of the more extreme budget cutters would like to eliminate the program that helps people without insurance receive life-sustaining medications, as the Texas Legislature struggles to pass a balanced budget.

“That would be called legalized murder,” said Don Maison, president and CEO of AIDS Services Dallas.

Among the more likely proposals being floated in Austin is to add only 400 to 500 people to the Texas HIV Medication Program (THMP) over the next two budget cycles, which runs four years.

Bret Camp

Local HIV healthcare providers said the proposed number is low compared to the number who will need the program.

Texas is a direct purchase state, according to Bret Camp, associate executive director of health and medical services for the Nelson-Tebedo Clinic at Resource Center Dallas. Camp explained that the state buys HIV medications and distributes them through a network of about 400 pharmacies throughout the state.

To qualify for THMP, a client must be diagnosed HIV-positive, be a Texas resident, be uninsured or under-insured for drug coverage, have income below 200 percent of the poverty level, and not receive Medicare.

Medicare recipients get their medication through the State Pharmacy Assistance Program.

In 1996, 5,100 people in Texas received their medication through THMP. Last year, the estimated number was 14,000.

Camp said he is concerned that increasing the number of eligible people over the next four years by just 400 would leave too many without the medications they need.

Camp said he expects the number of people needing assistance to increase significantly.

“The state is being responsible and promoting HIV testing,” he said. “The more testing, the more cases we’re likely to see.”

Just how much the state is spending on providing drugs for about 14,000 Texans with HIV is not known. Camp said that the state negotiates a price with the drug companies but does not publish the negotiated price.

“Nobody really knows what the price is,” Camp said.

Randall Ellis is the senior director of government relations for Legacy Community Health Services in Houston, formerly known as Montrose Clinic. He said that Texas probably pays in the range of $6,000 per year for someone in the program.

Individuals who have to purchase the drugs themselves or have insurance cover part of the price would pay closer to $24,000 or more.

Camp said that eliminating the program would save little when compared to the overall budget shortfall. But he said that the cost of caring for people who would have to make multiple emergency room visits and have extended hospital stays would be much higher than keeping them healthy in the first place.

Ellis said another problem is that the oversight committee, made up of stakeholders from around the state, sunsetted last fall. To reinstate the committee, the commissioner of Health and Human Services would simply have to repost the rules.

The committee made recommendations to the health department such as what drugs should be included in the program and what the eligibility requirements should be.

The commissioner, Ellis said, usually followed the committee’s recommendations. But the commissioner didn’t always want that input, he said.

“They want our input when it looks good to have community input,” Ellis said. “But when we ask tough questions, they’d rather not have us.”

Ellis does not expect all funding for THMP to be cut. He said that the state receives some funding through the federal AIDS Drug Assistance Program.

Camp said other states have thousands of people on waiting lists for ADAP programs.

“Florida is sorry right now,” he said. “They have dis-enrolled people.”

Florida has more than 3,000 waiting for medication. Unless those people find another way to get their medication, most will become sick, Ellis said, adding that if they are left untreated, those people will die.

Camp said that after recent hearings in the Senate Finance Committee, senators “seemed to leave with questions” that were on a level he hadn’t heard since early in the AIDS crisis.

On Tuesday, Feb. 15, the Texas HIV-AIDS Coalition is sponsoring Advocacy Day at the Capitol in Austin. A Dallas contingency will join groups from Houston, San Antonio and other cities as far as El Paso to talk to legislators about the need to fund the program.

For more information or to register for Advocacy Day, go TexasHIV.org.

—  John Wright

Cox named to board of Women’s Foundation

Cece Cox

From Staff Reports
editor@dallasvoice.com

Cece Cox, executive director of Resource Center Dallas, has been named to a three-year term on the board of directors of the Dallas Women’s Foundation.

The appointment is effective Feb. 1.

The foundation, established in 1985, focuses on women’s philanthropy, grant making and gender-specific research. It has given more than $13 million to more than 950 organizations, with a net impact on more than a quarter-million women and girls primarily in Dallas, Denton and Collin counties.

The foundation is part of a global network of 145 womens’ foundations on six continents.

Cox became executive director of RCD in July, 2010, after about three years as the center’s associate executive director for GLBT community services. As associated executive director, Cox was directly responsible for creating and maintaining programs at the center.

She has also worked with and/or supported the Turtle Creek Chorale, Legal Hospice of Texas, Youth First Texas and the regional office of Lambda Legal.

Cox is a former president of the Dallas Gay and Lesbian Alliance and a former co-chair of the Gay and Lesbian Alliance Against Defamation/Dallas. She serves on the advisory board for both the Black Tie Dinner and SMU’s Simmons School of Education and Human Development. In 1999, Cox received the Kuchling Humanitarian Award from the Black Tie Dinner.

Cox is an alumna of both Leadership Dallas and Leadership Lambda, a former board member of the Sexual Orientation and Gender Identification Issues Law Section for the State Bar of Texas, and an attorney licensed in the state of Texas. Prior to joining RCD, Cox was an attorney focused on commercial litigation, bankruptcy, municipal law and commercial transactions. She is a volunteer attorney for Legal Hospice of Texas.

Cox earned a bachelor’s degree in journalism from Northwestern University and a law degree from SMU. She is the mother of a 12-year-old son and the partner of Judge Barbara J. Houser.

This article appeared in the Dallas Voice print edition Jan. 28, 2011.

—  John Wright

Truvada breakthrough gets mixed reaction from local docs, advocates

Report that drug could protect HIV-negative men from infection is good news, but concerns remain over long-term effects, some say

David Taffet  |  Staff Writer taffet@dallasvoice.com

REMEMBERING THEIR NAMES | Two unidentified visitors console each other at the NAMES Project AIDS Memorial Quilt display in October 1989 in Washington, D.C. Panels from the Quilt will be on display in the International Peace Chapel at Cathedral of Hope on World AIDS Day 2010, Wednesday, Dec. 1. More coverage of World AIDS Day events in North Texas begins on Page 14. (Doug Mills/Associated Press)

An extensive study released this week indicates that use of the anti-retroviral drug Truvada by HIV-negative men can prevent infection. Use of the drug for prevention is called Pre-Exposure Prophylaxis or PrEP.

Dr. Nick Bellos, a local infectious disease specialist, called the results of the study a step in the right direction. But Bellos also warned that the study only showed 75 percent effectiveness in preventing infection among people who were most compliant. And he said he had concerns about patients developing resistance to the drug and not using other risk-reduction techniques.

Local AIDS activist Bret Camp, associate executive director for health and medical services at Resource Center Dallas, also warned that the side effects and long-term effects of using Truvada can be severe.

Global HIV Vaccine Enterprise executive director Dr. Alan Bernstein, referring to another recent study using a topical microbicide that appears to prevent HIV infection in women and another study that included the first demonstration of efficacy by an HIV vaccine regimen, said, “The announcement [about Truvada] … is a very important addition to what is the most promising 15 months in the field of HIV prevention research since the epidemic began 27 years ago.”

The Centers for Disease Control said the findings in the Truvada study are a major advance in prevention research and a new tool to reduce the risk of infection among gay men and bisexuals.

Dr. Brady Allen, a Dallas internist, was optimistic, but also had some concerns.

“I think we have a lot of issues to consider with PrEP,” he said. “We will certainly need recommendations from the CDC. In addition, I think it is promising work.”

AIDS Arms Executive Director Raeline Nobles was also optimistic.

“This study shows hope and a new way to battle the HIV epidemic,” Nobles said. “Usually we are a little apprehensive when there is a press release about new drugs or vaccines being tested, as we know there will be years of further study and validation — and often failure over time to come to fruition.”

But, she added, the Truvada study has her excited about the future.

Camp stressed that “The anti-retroviral prophylaxis approach is promising but only a piece of the solution.”

He said that the new drug therapy cannot replace traditional prevention methods, and he pointed out that new infections did occur among men who took the medication.

Among the 2,500 enrolled participants, 36 new infections occurred among individuals who received the drug. Among placebo recipients, there were 64 new infections. Researchers estimated that the use of the preventive medication cut new HIV infections by an estimated 44 percent overall when compared to placebo.

“Adherence to taking the pills is key to success,” Camp said.

The study did show that those who took Truvada daily had a much higher rate of protection than those who took the pills only half of the time.

Camp said that “two participants who seroconverted had resistance after” that would have been built by irregular use of the drug, causing it to be at a lower-than-therapeutic level in the blood at the time of infection.

Dr. Nick Bellos
Dr. Nick Bellos

Bellos said that those patients also may have contracted a strain of the virus that is resistant to Truvada.

But Bellos still called the results promising and said that prophylaxis is a good idea.

“In a perfect world, if we could get everyone treated, we could plateau the epidemic,” he said.

While the CDC called “developing guidance on the safe and effective use of PrEP and determining how to most effectively use PrEP in combination with other prevention strategies to reduce new infections in the U.S.” its most urgent priority, Camp warned of the risks.
While he said that compared to some of the other anti-retrovirals on the market, Truvada is fairly well tolerated, it can still cause headaches, nausea and diarrhea.

“It’s known to cause decreases in renal function,” he said. “We could be setting people up for renal issues and the long-term effects are just now coming to our attention. Cardio-vascular disease, diabetes — we don’t know what the next 10 to 20 years on those drugs will be.”

Bellos noted that metabolic bone disease could also be an issue.

He said that anyone taking the drug as a prophylactic measure would need to be medically monitored on a regular basis, just as someone who is HIV-positive.

Despite his concerns, Camp did say he believes the results are a breakthrough that proved a non-intended use or expected finding. Previous studies have shown a benefit of drugs for medical personnel accidentally exposed to the virus but this was the first time prevention was proven through sexual exposure.

“The value is more in post-exposure, when traditional HIV prevention mechanisms fail,” he said.

Camp said he is more excited about the research into anti-microbial topical gels that have recently also proven effective in preventing infection after exposure.

Bellos agreed.

“My preference is for a vaccine,” Bellos said.

“Then we don’t have to worry about it.”

He said that a study has been done in South Africa among couples where one is HIV-positive and the other is negative, showing that when the positive partner’s viral load is undetectable, the risk to the negative partner is about 6 percent.

“On therapy, 94 percent of the negative partners stayed negative,” he said.

Bellos also warned that the Truvada study showed that even for the most compliant participants in the study showed only 75 percent effectiveness in preventing infection.

He said he is concerned that people will ignore traditional prevention methods that have proven effective and instead rely on the less-effective prophylaxis.

Nobles said it has long been known that strict adherence to anti-retroviral treatment among HIV-positive people leads to less transmission of the virus to others.

But she wondered about some of the ethical implications that need to be studied, including the cost and availability of Truvada.

“If we can’t afford to treat all HIV positive people living with the disease today — which we cannot — how will we ever be able to afford paying for preventive medications, too?” Nobles said.

The drug costs about $45 per pill in the United States. Because the manufacturer gave away the patent for production by generic drug makers in other countries, it is available in some countries for under $1.

“One wonders if insurance companies are going to be willing to pay for this,” Allen said.

Bellos said that he has some patients with family members in places like Pakistan and Thailand and they are able to get the drug from overseas.

“We should have two other large PrEP trials reported on in 2011 in other high-risk groups, which will help confirm or refute these results,” said Allen.

President Barack Obama also weighed in on the importance of the study.

“I am encouraged by this announcement of groundbreaking research on HIV prevention,” the president said in a statement released Tuesday, Nov. 23.

“While more work is needed, these kinds of studies could mark the beginning of a new era in HIV prevention,” the president said.

“As this research continues, the importance of using proven HIV prevention methods cannot be overstated.”

……………………..

MORE ON TRUVADA

Truvada is a combination drug therapy known as a nucleoside analog reverse transcriptase inhibitor. Two anti-HIV medications, Emtriva® and Viread®, are combined into one pill that is taken once a day with or without food.

In the United States, the cost of the treatment is more than $1,000 per month.

Manufacturer Gilead has given away the patent for generic manufacturers to produce and sell it in third world countries. There, the cost of the drug averages 45 cents a day or about $15 per month.

Those generic medications are not available in the United States.

Dr. Nick Bellos said that patients of his who have access to the generic medication have family members in those countries that are filling the prescription and sending them the drug.

Truvada has been one of the more successful HIV medications. Fewer people seem to experience side effects on this drug than on some of the others.

Studies show that more people became and stayed undetectable over a three-year period on Truvada than on Combivir or Sustiva, two other popular HIV medications.

Those on Truvada showed a greater increase in the number of CD4 cells than on other medications.

Side effects include nausea, vomiting, unusual muscle pain and/or weakness.

Longterm use could lead to liver damage, renal failure, increased risk of diabetes and metabolic bone disease.

Changes in body fat have been seen in some people taking Truvada.

—David Taffet

This article appeared in the Dallas Voice print edition November 26, 2010.

—  Michael Stephens

DGLA hosts rally for safe schools in Oak Cliff

About 50 people gathered around a pavilion in Lake Cliff Park in Dallas on Friday evening for a safe schools rally organized by the Dallas Gay and Lesbian Alliance.

The crowd, which included several local TV news crews and about a dozen youth, listened as a series of speakers talked about what can be done to stop bullying, mentor children and quell the national gay teen suicide crisis.

Jesse Garcia, president of Dallas’ gay LULAC council, choked up as he recounted his own struggle to overcome bullying.

“We’re here for you,” Garcia said. “We care about you. You are our children. Don’t give up.”

Larry Duncan, president of Dallas County Schools, which provides transportation and other services for local school districts, told the crowd it was unfortunate Friday’s rally was even necessary.

“It isn’t about why we’re here, it’s about why the other people in our city and county aren’t here,” Duncan said. “The fact that we have to be here is a shame.”

State Rep. Roberto Alonzo, D-Dallas, vowed to push safe schools legislation that includes LGBT youth in next year’s legislative session.

Dallas City Councilwoman Delia Jasso said she’ll encourage the Dallas Independent School District to add sexual orientation and gender identity to a proposed new anti-bullying policy the district is considering.

“Just know you are not alone,” Jasso said. “There are lots of us on the City Council, myself included, who are here to help you. We cannot afford to lose any more teens to suicide.”

As currently written, DISD’s proposed new anti-bullying policy doesn’t include specific protections for LGBT youth. But Lee Taft, associate executive director at Resource Center Dallas, said DISD’s board of trustees agreed to delay discussion of the new policy this week in response to a request from his organization.

Taft, who lost his partner to suicide in the 1980s, said the community must focus on prevention instead of “post-vention.” He also said the media needs to strike a balance to avoid glamorizing suicide and fueling a copycat phenomenon.

“Let’s make sure that we don’t make martyrs and don’t empower bullies,” Taft said.

Patti Fink, president of DGLA, said the bullying children endure in school wouldn’t be tolerated in any other part of society, including the workplace or even people’s own neighborhoods.

“It’s a travesty that our children are experiencing brutality in our schools every day that prevents them from learning,” Fink said, issuing a call to action. “This is the time, this is the date, this is the energy we need to go forward.”

—  John Wright

Local ASOs respond to disability proposals

New guidelines are more specific but would require qualifying for benefits every three years

DAVID TAFFET  |  Staff Writer taffet@dallasvoice.com

Bret Camp
Bret Camp

The Institute of Medicine has published recommendations that would change guidelines for people living with HIV to apply for Social Security disability.

Bret Camp, Resource Center Dallas’ associate executive director for health and medical services, said the recommendations are a starting point for discussions about changing those qualifications.

To qualify, the institute recommended that a person’s T-cell count would have to be less than 50. Currently, a count of 200 or lower is generally needed to qualify.

The other major change is that persons qualifying after new rules take effect would have to requalify every three years. Currently, disability payments are for life.

Certain AIDS-related illnesses would qualify someone for disability payments no matter what the CD4-cell count is. Wasting syndrome, for example, would impair a person’s ability to function, the Institute of Medicine report said. Dementia, AIDS-related cancers, heart disease or hepatitis are other conditions they list that would qualify a person for disability payments.

“These seem fairly reasonable to me,” said AIDS Arms Executive Director Raeline Nobles. “Perhaps I would consider a CD4 of 100 rather than 50 — 50 does seem very low and indicates rather extreme health vulnerability.”

She said that by the time someone has a CD4 cell count of 50, chances are they have already experienced an opportunistic infection.

“However, current treatment, if ongoing and proactive and of high quality, does do miraculous things these days even for people with CD4s who drop well below 50,” she said.

“The Social Security Administration is beginning to revise the listing criteria for every condition starting with HIV,” Camp said. “Reevaluation has always been a goal for SSA.”

He said that because of strides in treatment of HIV over the last 15 years, this was a good place to start.

Current guidelines are not as specific, he said. Camp said he likes the specific enumeration of certain AIDS-related cancers and other infections.

He said he has worked with people who have been denied benefits with a CD4 cell count of 200 and seen people with a higher count receive them.

Nobles worried about compromising access to treatment because disability status impacts Medicare eligibility.

“That would be disastrous,” she said. “Sure, HIV treatment has come a long way — for those who have ongoing access to that treatment administered by specialists in the field. And therein lies the problem.”

Nobles is also worried about unforeseen problems with the changes.

“Often governmental entities seem to forget that a change in one area ripples throughout the entire system of care and support and has ramifications they should have thought about, but didn’t until it’s too late and significant issues/problems emerge,” she said.

Steve Dutton, executive director of Samaritan House in Fort Worth, said the proposed changes don’t surprise him.

“It’s going to be tough,” he said.

Dutton said he likes the addition of certain specific categories that qualify people for disability but worries about those who don’t quite fit into those categories.

“I hope there are still some gray areas,” he said.

Dutton also wondered about the motive.

“They’ll look for every opportunity to minimize the number of people covered,” he said.

He agreed that those who manage their disease well can go back to work without further need for disability payments.

But he worries about those who became ill and are too sick toward the end of the three-year period to go through the bureaucratic paperwork to qualify again.

For more on the report go online to iom.edu/Reports/2010/HIV-and-Disability-Updating-the-Social-Security-Listings.aspx

This article appeared in the Dallas Voice print edition October 08, 2010.

—  Kevin Thomas

Forum set to promote HIV awareness

from staff reports

Resource Center Dallas will hold a community forum seeking input to expand awareness and prevention of HIV/AIDS in an effort to battle the growing rate of HIV/AIDS in Dallas County, on Tuesday, Oct. 12, from 6 p.m. to 8 p.m. at the center, 2701 Reagan St.

The forum is being held in collaboration with Dallas County and other community partners. It is free and open to the public.

Bret Camp, associate executive director for health and medical services at the center, said, “The goal is to lay groundwork for a community-driven effort that will reduce the transmission of HIV/AIDS, and to increase awareness of the services available to the public.”

He noted that a recent CDC study found that in 2008, one in five — or 19 percent of — men who have sex with men in 21 major U.S. cities are infected with HIV. Nearly half — 44 percent — were unaware of their infection.
The forum is part of the “Greater Than AIDS” project which responds to the AIDS crisis in the United States by targeting the severe and disproportionate epidemic among the gay community and African-Americans. The effort aims to raise knowledge and understanding of HIV/AIDS and confronts the stigma surrounding the disease.

Resource Center’s forum concentrates on gay men and will target communities most heavily affected, based on HIV/AIDS incidence and prevalence data, to ensure its success. Information gained will be used in strategic planning to reduce the number of HIV cases in the Dallas metropolitan area.

This article appeared in the Dallas Voice print edition October 08, 2010.

—  Kevin Thomas

Taft joins RCD as associate director

Longtime activist says he is excited, scared by the opportunities he has as head of center’s LGBT programs

DAVID TAFFET  |  Staff Writer taffet@dallasvoice.com

Lee Taft
Lee Taft

Resource Center Dallas has hired Lee Taft as associate executive director of GLBT programs and strategic partnerships.

William Waybourn, one of the founders of Resource Center Dallas, called the hiring of Taft genius.

“Talk about a power couple at the right time for the right organization — [Executive Director] Cece [Cox] and Lee are it,” Waybourn said.

Taft was hired to replace Cox who became executive director of the organization after former director Mike McKay left last spring.

“This place has a regional and community history,” Taft said. “But it also is deeply personal. I worked with John [Thomas]. I worked with Bill [Nelson] and Terry [Tebedo].”

Thomas was the first executive director of Resource Center Dallas. Nelson and Tebedo were founding board members and created the food pantry at their store, Crossroads Market. The Nelson-Tebedo clinic on Cedar Springs Road is named for them.

Taft was an attorney for 20 years. As a board member of the Texas Human Rights Foundation, he was involved in the Don Baker case.

Baker, a Dallas school teacher, challenged the Texas sodomy law. In that 1982 lawsuit, Judge Jerry Buchmeyer declared the Texas statute unconstitutional.

“For me, it was a time when I could have been fired on the spot from my law firm,” Taft said about his own involvement in the case. “Jerry wrote a phenomenal decision.”

An en banc hearing by the full court later reversed the ruling.

Taft left Dallas to attend Harvard Divinity School in 1996. In 1999, he became the school’s dean.

But through his affiliation with THRF, Taft had worked with Lambda Legal since its founding. In 2001, Lambda Legal opened its South Central region and tapped Taft to open the Dallas office.

He became the regional spokesperson for the Lawrence v. Texas case that originated in his Dallas office was the case that led to the U.S. Supreme Court overturning the Texas sodomy law. It has been cited in every case that has advanced LGBT rights since.

Taft called the wording of Lawrence an apology for Hardwick and an exoneration for Baker.

Taft left Lambda Legal later that year to found his own consulting practice as an ethicist.

Among the many clients he helped was the city of Dallas that hired him to steer it through the fake drug scandal in which police planted fake drugs and charged dozens of people on narcotics violations.

“Madeleine Johnson hired me in guiding the response,” Taft said, and based on his recommendations, “The city council passed a five-point resolution.” Johnson was Dallas city attorney at the time.

Among Taft’s recommendations were expressions of remorse, directions to settle the case and changes of policies and procedures. He said the settlement was financially efficient, avoided a racial fracture in the city and has been cited as a model of how a city should respond.

Including expressions of remorse rather than just issuing an apology is something that Taft said was confirmed for him during a discussion he had in Dallas with Bishop Desmond Tutu.

He said reconciliation in South Africa was failing because all that was required was an admission of deeds without an expression of regret.

He said he would bring that lesson to some of his work at the Resource Center, specifically citing the center’s domestic violence program.

Taft said he doesn’t believe an apology is all that’s necessary from batterers: There also needs to be an expression of remorse.

Cox said she was excited about the rich background Taft brings to his new position.

“He has an understanding of this organization and how we fit into the overall GLBT movement and HIV communities we serve,” she said.

She said she planned to keep him quite busy.

“I expect him to be able to do a number of things — position our programs to be more sustainable and relevant in the future; integrate our health and GLBT programs to promote wellness.”

Although Taft wasn’t looking for a job when he applied this summer, he said he couldn’t pass up the opportunity.

“When Mike McKay became director and described Cece’s position, I thought it was the coolest position in the community,” he said.

Taft said his new job will allow him to be innovative and creative and do something important.

Taft calls his resume eclectic. His list of community activities is as long and varied as his professional career. In addition to THRF, he was a founding board member of AIDS Interfaith Network. He worked with Gay Line, a help line that was later folded into Oak Lawn Community Services. Today, Resource Center Dallas receives many of those types of calls.

Earlier this week, Taft was in California speaking on ethics at Pepperdine University School of Law. After he assumes his new role at the Resource Center, he plans to continue doing some speaking, which he hopes will help develop strategic partnerships for the agency.

Cox added “strategic partnerships” to the job title and said she considers developing new relationships for the agency to be a major goal for Taft.

He said his new position would give him an opportunity to grow.

“There’s something about this,” he said. “It’s on-the-ground community activism that excites me and scares me.”

This article appeared in the Dallas Voice print edition October 01, 2010.

—  Michael Stephens

Red Mango franchise donates equipment to RCD

‘Quality used kitchen equipment and appliances’ will be used for center’s hot meals program, officials say

From Staff Reports

Bret Camp
Bret Camp

Officials at Resource Center Dallas announced last week that the agency has received “a sizable donation of quality used kitchen equipment and appliances” from the local franchisee for Red Mango yogurt.

The equipment will primarily be used to support the center’s weekday hot lunch program for people living with HIV/AIDS.

The equipment includes three stainless steel under-counter refrigerators, a double-door stainless steel freezer, an iced tea/coffee brewer, a refrigerated deli display case, a countertop convection oven, a couple of ice cream dipping cabinets and three stainless steel trash cans.

Officials said the refrigerators, freezer, tea/coffee brewer and trash cans were put to immediate use in the meals program.

Since the early 1990s, the center’s hot meals program serves a lunch to more than 100 HIV-positive clients each Monday through Friday.
Bret Camp, associate executive director for health and medical services at the center, said, “This generous donation from Red Mango will allow the meals program to easily store perishables and supplies for our lunches, and increase our ability to accept donations of perishable food products.

“We’re always grateful when businesses in our community support the center’s programs,” he added.

The franchise holder for the Dallas-area Red Mango stores, Bill Chinn, acquired the equipment when he took over a former restaurant space for a store location. The equipment had been in storage when the manager of the Red Mango at the Ilume on Cedar Springs read about the center’s “Hell Freezes Over” fundraiser to buy a new ice machine, and he suggested that the equipment could be put to use in the center’s hot meals program.

The Red Mango at Ilume also has a donation box in the store for the center, and so far has collected more than $400 for Center programs and services.

This article appeared in the Dallas Voice print edition August 27, 2010.

—  Kevin Thomas

Dallas ASOs win fight to keep client info off Web

DSHS wanted patient notes added to secure online server to help in audits; agencies say risk to confidentiality was too great

DAVID TAFFET  |  Staff Writer taffet@dallasvoice.com

Raeline Nobles
LEADING THE FIGHT | Raeline Nobles, executive director of AIDS Arms Inc., took the lead in negotiating with DSHS to keep AIDS service organizations from being forced to put confidential client information on an online server.

Local AIDS agencies have prevailed over a Department of State Health Services mandate to post all confidential client notes on an Internet database.

The agencies began battling the mandate after state officials claimed that ARIES, the new database, would be secure but could not provide a list of who would have access to the system to the agencies.

“That hit me like a brick,” said Don Maison, executive director of AIDS Services Dallas.

He said immigration status, incidents of domestic violence and other personal information would all become public. He sent his staff for training on the system but instructed agency employees not to enter any information.

Bret Camp, associate executive director of health and medical services at Nelson Tebedo Clinic, said, “We have information available for review. We will not be entering information in ARIES.”

Dallas County sided with local AIDS service providers. After almost a year of negotiations, the state compromised and will allow agencies to provide the data needed by the state without posting confidential notes on line.

The only objections to using the system came from Dallas.

Raeline Nobles, executive director of AIDS Arms, said all agencies funded by Ryan White Part B money in Texas would be affected.

Houston doesn’t receive this type of funding. Agencies in other parts of the state told Nobles they were too small to fight the new mandate.

That left Dallas organizations to lead the fight to protect personal information from being compromised on line.

“We were successful,” said Nobles, who led the opposition and negotiated with the state on behalf of the county and Dallas AIDS service providers.

“DSHS has come back and decided to negotiate a fair and equitable deal,” she said. “Austin has done the right thing on behalf of clients and agencies.”

The state agency told both Nobles and Maison that it needed all of the client notes to audit the agencies. They said allowing state officials to examine the agencies without traveling to the various locations across the state would save money. The state, however, pays the county to review agency records.

Greg Beets, DSHS public information coordinator for HIV/STD programs, said that the reason behind ARIES is to codify and evaluate HIV services across the state. He said confidentiality was the state’s biggest concern as well.

“The data helps provide a snapshot of what services are being provided and identify unmet service needs,” Beets said.

Beets said that the system met standards developed at a national level and a series of measures would ensure security. Those measures included limited access to the information on a need-to-know basis, security at the building in which the computer was housed and encrypted information.

Those assurances did not satisfy Dallas AIDS agencies. Nobles pointed out that from time to time information is compromised from financial institutions that spent quite a bit of money on their technology.

“If information ever got out to the public, we’d be liable,” Nobles said.

Several years ago, the state required AIDS organizations to invest millions in new computer record keeping systems. She said all of the information is currently kept on a secure computer database within the agency. That computer system is not Internet-based.

Nobles’ agency raised several hundred thousand dollars to satisfy the unfunded mandate to build their database, and, she said, Parkland spent more than $1 million on their system.

To move the information to the new state computer system would be a complete waste of that money the state required her to raise from local donors, Nobles said.

She explained she feared moving the information off the database to a state system would compromise her credibility with her agency’s donors.

“But privacy is the number one issue,” Nobles said. “We can’t build a reliable relationship with clients if they don’t believe it’s confidential.”

Maison was even more adamant.

“This agency would be in court,” Maison said. “It wouldn’t take a rocket scientist to see what this policy does to make people run from care.”

Maison said people with HIV who use public services give up quite a bit of their privacy, “But to invite the government into your daily life is not acceptable.”

Nobles said she was never arguing about the state’s right to see AIDS Arms’ records. “Any time a government public health funder needs to audit, they can do so,” she said. She said that the information the state needs is statistical information.

But, Nobles added, she couldn’t imagine what use the client notes would have been.

The state will maintain the ARIES system. Nobles said smaller agencies, especially in rural areas that could not afford their own database, might want to use it.

Maison was happy with the outcome.

“I don’t recall being on the same side as the county before,” said Maison, who has headed ASD for more than 20 years.

Camp was also pleased with the outcome. “I’m very pleased Dallas County understood the importance of client confidentiality and backed the service providers,” he said.

This article appeared in the Dallas Voice print edition August 13, 2010.

—  Kevin Thomas

Local Briefs • 07.23.10

Resource Center Dallas receives MAZON grant for second year in a row

Officials at Resource Center Dallas announced this week that the center, for the second year in a row, has received an $8,000 national grant from MAZON: A Jewish Response to Hunger in support of the center’s food and nutrition programs.

“This grant from MAZON provides critical financial support to our long-standing pantry and hot meals programs in these challenging economic times,” said Bret Camp, associate executive director for health and medical services at Resource Center Dallas. “Many of our clients live on a fixed income and are unable to work. The services we provide through these programs improve both their health and quality of life.”

Nutritional services are available through a food pantry as well as hot lunches at the center. The pantry, located at 5450 Denton Drive Cutoff, serves more than 800 clients Monday through Thursday. More than 100 clients a day, each Monday through Friday, eat at the center as part of the hot meals program.

ONE holding screening of HBO documentary ‘The Lazarus Effect’

ONE, a global advocacy and campaigning organization dedicated to fighting extreme poverty and preventable disease, will hold a screening of the HBO documentary “The Lazarus Effect,” on Thursday, July 29, at 7 p.m. at the Progressive Center of Texas in South Side on Lamar, 1409 S. Lamar St. in Dallas.

C.U.R.E. will display panels from the AIDS Memorial Quilt at the screening, and officials with Resource Center Dallas will conduct a discussion about the film after the screening.

Planned Parenthood’s Kelly Hart to be guest speaker at TDWCC meeting

Texas Democratic Women Collin County holds its next general meeting Monday, July 26. The meeting will be held at 6:45 p.m. at the  Founders Room of Shawnee Hall at the Preston Ridge Campus of Collin College, 9700 Wade Blvd. in Frisco.

Guest speaker will be Kelly Hart, executive director of Planned Parenthood of North Texas, who will discuss the health reform law and recent developments at the national level that pertain to women’s health.

There will also be a report from members who attended the Democratic State Convention in Corpus Christi.

This article appeared in the Dallas Voice print edition July 23, 2010.

—  Kevin Thomas