Gail Inderwies, MBA, BSN, RN, CHPN, was ahead of her time.

In the mid 1980s when AIDS was first recognized and named an epidemic, she was there. She cared for many patients when others refused.

Fear of the disease was high, but Inderwies, past vice president of Keystone Home Health Services and president and founding executive director of its sister agency, Keystone Hospice, both in Wyndmoor, PA, saw patients in need of treatment and compassion.

Compelled by AIDS

"Keystone Hospice was started because of our AIDS patients, because no one would take them and most would die waiting to be served," said Inderwies, who in spite of her management position still sees patients. "It was based on a lack of education about the disease. That's the irony - people are afraid of HIV more than hepatitis C, but you would be hard pressed to contract AIDS from a patient if you were following normal infection control practices."

Inderwies encountered her first patient with AIDS in 1986 at his home. "A lot of nurses at that time would not touch these patients. Many were trying holistic therapies along with a wide range of unsuccessful treatments. All you could do was try your best to help those suffering from the disease live as long as they could with as much dignity as possible."

With few hospices taking patients with AIDS, those that did had a long waiting list. Many patients did not live long enough to receive these services. On the average, patients lived only a few months with great suffering and social isolation.

Raised as a Catholic and considering herself a spiritual person, Inderwies saw a correlation between the stories taught by nuns about lepers who were shunned and the patients she saw who had AIDS. "I never felt afraid; I used standard infection control precautions and good handwashing technique as I would any other patient, I knew many nurses who would refuse to care for these patients" she said. "Witnessing folks struggle to live and enduring great suffering, I felt called to make it a personal battle to help those who were most impacted by this dreadful disease."

That desire continues today, as Keystone Hospice offers home-based and residential hospice care for people with AIDS, with a focus on underserved and disenfranchised populations and pediatrics. Its specialty is the creative and responsive management of HIV and other chronic diseases, while considering the challenges of poverty and diversity.

Not What We Think

Though the days of patients dying after a few short months are gone, many have rosy views of patients living with AIDS for years, virtually symptom free. This is not the case. While advances have been made in medications and many are living with AIDS as a chronic disease, patients are experiencing debilitating side effects and far too many are seeking treatment after the disease has taken hold.

"I have seen many changes over the years," said Thomas Salber, RN, HIV specialist with Keystone Home Health Services for the past 5 years. "Today I see a large number of newly infected [people] who are younger and sicker. Also, I see major medical issues for individuals at a much earlier age. You wonder are they the result of the virus or the effects of medications?"

"I think AIDS has become the status quo in this country," added Inderwies. "I think the drugs have given people a promise of hope, but even the drugs have their own set of side effects. And there are a lot of people who think there is a cure now or it doesn't impact them.

"In the past couple of years, I have seen a rise in opportunistic disease," continued Inderwies. "The most severely hit group is minorities, particularly females and men having sex with men. In addition, the fastest growing group is people over age 50. What we are doing to prevent it is not working, especially within the minority community. "