On Oct. 18 the People With AIDS Coalition of Utah held its 20th annual Living With AIDS conference, a symposium to educate people living with HIV/AIDS, their family and friends, and medical professionals who work with PWAs about community resources and current medical information.
The conference began with a medical update by Dr. Harry Rosado-Santos, Dr. Larry Reimer and Dr. Dana Smith, from the University of Utah’s Division of Infectious Diseases. The physicians introduced the 23-member audience to three new drugs, Raltegravir Isentress, Maravirog Selzentry and Etravirine Intelence. They also discussed the differences in HIV medications, and took questions from the audience on a number of topics. These included when people with HIV/AIDS should be vaccinated for ailments such as influenza, pneumonia and Hepatitis B.
The physicians agreed that it is best to get vaccinated for pneumonia when one’s T-cell count is above 300. People with lower counts, said Rosado-Santos, may not have immune systems that can utilize the vaccine.
Also called CD4 cells, T-cells protect the body from infection. The HIV virus preys on these cells to make copies of itself, a process which weakens the immune system and puts people with HIV and AIDS at risk for succumbing to illness and infections.
The physicians also discussed treatments for Hepatitis C, which is often co-morbid with HIV. Although there is no cure yet for this disease, treatments of certain mutations of the disease are available, namely genotype-1. A series of tests over three months can help determine how well an individual patient with this genotype will respond to treatments. The physicians were quick to point out, however, that treatment for this disease can cause depression or worsen it in people who have a previous diagnosis of depression. But patients who complete all or at least 80 percent of the Hepatitis C medication generally had a good response to the treatment.
The physicians also warned people with HIV/AIDS to talk with their health care providers before taking any herbal supplements aside from multi-vitamins, to make sure these would not affect their medication regimen.
Dr. Jerry Cade of the University Medical Center in Las Vegas, Nevada gave a 60 minute presentation on considerations people with HIV or AIDS should take into account before switching their medication.
“I try to encourage my patients not to switch as long as they’re virus negative and not having side effects,” he said.
Cade explained that HIV medication cocktails typically include three different drugs, each one designed to stop the virus from replicating at different stages. If one drug is missed or if medications aren’t taken together, he explained, the patient runs the risk of allowing the virus to mutate, and thus become resistant to his or her treatment regimen.
Patients who switch can run the risk of this happening, Cade continued. They can also risk having their previous regimen stop working if they decide to switch back. Additionally, he said that people who switch will not be able to suppress the virus immediately on their new medications, because the body stores “reservoirs” of the HIV virus. He also reminded attendees not to switch to a new drug on the market just because it has worked for other people.
“Not all HIV meds work for all people,” he said.
He also advised patients to consider a number of other factors before switching such as whether or not they can manage the side effects of their current drugs, and whether or not a change in regimen could be confusing—such as switching to a drug that must be once daily when a patient is used to taking drugs every eight hours.
After lunch, PWACU director Toni Johnson discussed the services available to Utahns with HIV/AIDS and the services PWACU can provide, including referrals to case managers, HIV/AIDS education, recreation programs and free internet access in their offices for PWAs to use. She also mentioned that the organization’s new venture, Our Store: Your Thrift Alternative, can give people with AIDS vouchers for items such as clothing, furniture and dishes, just as the organization’s thrift room had done in the past.
The bulk of her discussion, however, focused on the Ryan White CARE Act, a federal program that provides medical care funds to under or uninsured people with HIV and AIDS. In the past seven years, said Johnson, Utah has received flat funding for this program, even as the number of people with HIV has increased.
“Every year the program in our state has to cut a service,” she said, noting that enrollees currently receive $750 a year for dental coverage, money for their HIV medications and mental health care and insurance under the High Risk Insurance Program. Money for bus transportation, she added, will likely be the next thing to go.
Worse, Johnson added, the Utah legislature made no contribution in 2008 to the state’s AIDS Drug Assistance Program, the part of the Ryan White program which uses federal and state money to grant people with HIV/AIDS access to medication. Currently Utah has 629 people enrolled in this program, a number that has increased 35.5 percent over the past two years.
This year, the state legislature eliminated ADAP’s $184,000 budget on grounds, Johnson said, that no one from PWACU had asked for funding after former PWACU director Stewart Merrell moved out of state. To reopen ADAP to new enrollees and prevent future cuts in money for medication, PWACU is forming an action committee to lobby the state legislature for $250,000 for ADAP, or approximately $358 per person. That money, Johnson said, will keep people with HIV/AIDS from having to go on Medicare, which would cost the state $12,000 per person each year.
In preparation for the 2009 session, Johnson said she needs PWAs and their supporters to help with bulk mailings about the funding request, and to write to their representatives about the need for this funding. She also encouraged attendees to write letters to the state’s newspapers and to consider testifying before the legislature.
Frank Evans closed the day with the two hour session “Getting Stronger with Your Weakness in Mind.” This workshop asked participants to identify negative behaviors they would like to change, the reasons they engaged in such behaviors, and how their positive personality traits could help them in undoing such behaviors.