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Wednesday July 23, 2014

From Death and Dying, to Caring for the Living

From Death and Dying, to Caring for the Living

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Rutgers addresses today's challenges of treating people living with HIV/AIDS

Peter Oates (l.), John Nelson
Peter Oates, left, and John Nelson are helping to implement a new HIV curriculum for advance practice nursing.

'Today, we have the medication to survive, to stop the destruction of the T-cells in the immune system. But people who are infected must change their behavior and mindset, because they can become resistant to their medications if they don’t stick to the prescribed treatment regimen.'  – Peter Oates

Peter Oates vividly recalled counseling a 28-year-old Newark woman with AIDS who refused to take her life-saving regimen of drugs – or “cocktail” – regularly. 

The result: Her T-cell count – a key indicator of the body’s immune status – fell to a dangerously low level of six. “Finally, the light bulb went off,” said Oates, and she began following orders.

Today, 14 years later, her T-cell count today is about 800 – a level associated with health – and her outlook is bright for a near-normal life, though she remains infected with human immunodeficiency virus (HIV), the virus that can lead to AIDS.

“Today, we have the medication to survive, to stop the destruction of the T-cells in the immune system,” said Oates, director of health care services at the François-Xavier Bagnoud Center within the Rutgers School of Nursing. “But people who are infected must change their behavior and mindset, because they can become resistant to their medications if they don’t stick to the prescribed treatment regimen.”

Approximately 50,000 new cases of HIV infections are reported annually in the United States, and just 200 of those involve newborns.  The death rate from AIDS and the perinatal infection rate have fallen dramatically.

To health care professionals who were present when the AIDS epidemic hit three decades ago and witnessed the pain and suffering the disease caused, claiming approximately 25 million lives globally, the “cocktail” – a combination of antiretroviral drugs – revolutionized treatment.  “At first, it was death and dying,” Oates said.  “The need was to take care of dying patients.”

Thanks to the right meds, treating persons with HIV/AIDS evolved to caring for the living. But other barriers to delivering that care remain, including nursing and other health care provider shortages, the stigma of HIV, and health literacy.

That’s why the Rutgers College of Nursing and the FXB Center at the Rutgers School of Nursing, both at Rutgers Biomedical and Health Sciences, recently collaborated on a five-year, $1.5 million federal grant, under the leadership of Suzanne Willard, associate dean and clinical associate professor at Rutgers College of Nursing. 

People think HIV is no longer an issue,” said Willard. “But HIV is still here and people are continuing to be infected.  The stigma is still there.  So much still needs to be done."

The grant will go toward training more nurses to serve infected and at-risk populations in urban areas.  The Bureau of Labor Statistics projects an overall need for 495,000 nurses by 2020.

“There’s always been a shortage of nurses and other providers,” says John Nelson, the FXB Center’s director of national training who, along with Oates, will help Willard implement a new HIV curriculum next year, “but now we are facing more retirements and a lack of enough faculty to teach.”

In addition to clinical learning, major portions of the new curriculum will utilize an interprofessional approach to care and treatment, prevention, and the social determinants of health care to help increase the population receiving treatment by building on the successful nationwide model for treating HIV and AIDS. 

While some at-risk individuals still reject testing – “What happens if I test positive?” is an argument Nelson said he hears too frequently – convincing people living with HIV who feel and look well not to interrupt their treatment regimen continues to be a struggle, particularly among younger patients infected before medication ended the onslaught of perinatal infection. This is not unique to this population; health care providers who work with hypertension and diabetic populations face similar issues.

“Teens rebel against everything, and they want to fit in with their friends.  Taking the medication is a big issue for them,” Oates said. On some cases, psychiatrists and social workers consult to address patients’ “oppositional defiance.”  They will also meet with the family when the guilt of the mothers who transmitted the virus during pregnancy has had a major impact on the dynamics of the family.

The Centers Disease Control and Prevention estimates that only 37 percent of newly infected individuals in the United States routinely attend their treatment appointments.  That number should rise appreciably with the implementation of the Affordable Care Act, which is expected to reimburse patients for all or most of their medications. However, experience with such a “fragile” infected population demonstrates that the more caregivers reinforce the need to medicate diligently, the greater the likelihood of success.

“If you don’t have enough resources to do follow-ups, it doesn’t get done,” Nelson said.  “If you’re going to engage people in care, it’s the ongoing care and follow-up that need to take place.”

With the new grant, the expectation is that more advance practice nurses will be ready to meet the challenge.  

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