Nebraska has joined Montana and Indiana as states that have placed patients on waiting lists for federal aid to pay for HIV/AIDS drugs.
About a dozen patients in Nebraska are now on a waiting list, said Susan Swindells, M.B.B.S., medical director of the University of Nebraska Medical Center HIV Clinic.
"This federal support is vital because these drugs are expensive and many of our patients don’t have the means of paying for this medicine otherwise," Dr. Swindells said.
A 39-year-old mother of one who will be called Jennifer for the purposes of this story is a patient at the UNMC HIV clinic. She also is on the waiting list.
"I’ve been off my medication for two or three weeks now because, unless you have insurance, you simply can’t afford this medication," said Jennifer, who has no insurance and recently was laid off from her job as a teacher at a community college. "It’s really scary knowing the virus is getting stronger inside me."
A UNMC HIV Clinic representative said the monthly cash price for the drugs Jennifer takes is more than $2,400.
Jennifer also worries that if she doesn’t have access to a steady supply of the drugs, the virus will be able to grow and mutate in ways that make it resistant to the medication.
A rising number of HIV/AIDS patients and lagging support for the funding — which is known as AIDS Drug Assistant Program (ADAP) funding — has necessitated the waiting lists in states where funding has essentially run out.
ADAP funds are part of the Ryan White CARE Act. Dr. Swindells and others around the country have urged Congress to increase funding for the Ryan White CARE Act, which is up for reauthorization this year. Dr. Swindells said Congress should vote on the act in December.
"We understand that this is a horrible time to ask for more money for anything but these drugs are a cost-effective investment," Dr. Swindells said. "They help keep people with HIV/AIDS healthy and productive and this decreases the burden on the health care infrastructure as a whole."
Staff at the UNMC HIV Clinic try to help Jennifer and others on the waiting list acquire medication by other routes but this becomes a cumbersome process, Dr. Swindells said.
"We have to jump through quite a few hoops and often end up having to help these patients get drugs that are less effective than those they’d receive with ADAP support," Dr. Swindells said. "That’s really no way to treat a patient."
UNMC is the only public health science center in the state. Its educational programs are responsible for training more health professionals practicing in Nebraska than any other institution. Through their commitment to education, research, patient care and outreach, UNMC and its hospital partner, The Nebraska Medical Center, have established themselves as one of the country’s leading centers in cancer, transplantation biology, bioterrorism preparedness, neurodegenerative diseases, cardiovascular diseases, genetics, biomedical technology and ophthalmology. UNMC’s research funding from external sources now exceeds $82 million annually and has resulted in the creation of more than 2,400 highly skilled jobs in the state. UNMC’s physician practice group, UNMC Physicians, includes 513 physicians in 50 specialties and subspecialties who practice primarily in The Nebraska Medical Center. For more information, go to UNMC’s Web site at www.unmc.edu.