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Sidney Hardgrave, Executive Director: MAG
Sidney Hardgrave is the Executive Director of the Douglas County AIDS Project, a not-for-profit institution dedicated to educating people about AIDS and helping patients with HIV/AIDS.
How did the AIDS epidemic begin?
There are lots of theories about how HIV originated, but most likely it came to America when international air travel became common. As people were able to have relationships across continents, HIV came to the U. S. and other countries where it had not been before. HIV probably originated in Africa, although cases of AIDS in Europe as early as 1930 have led some to believe that it originated there. Either way, AIDS is most likely a mutation of a similar virus that occurs in apes and monkeys. Scientists are not sure how the virus crossed over to humans.
When was AIDS identified as a disease?
AIDS was identified in the United States around 1986 when we started calling it HIV. Prior to that, clusters of gay men would die with similar symptoms, and the general public believed it was some sort of "gay cancer. " Even the medical profession thought it was a deadly disease that afflicted only gay men until 1986. When HIV was identified, it was also recognized that it crosses barriers of sexual preference and gender.
How much progress, or lack thereof, has been made?
I think we have made extraordinary progress, especially in research. In20 years we have made more progress than in the last 60. In that time we have identified the virus, discovered how it replicates and developed treatments to help keep AIDS from reproducing inside the body, allowing people with HIV to lead longer, healthier lives. In 1988 a person with a positive HIV diagnosis would live three to five years. Now, some HIV-positive people have been living for more than 25 years without developing symptoms.
How has AIDS and its treatment changed since you started working at the Douglas County AIDS Project?
I started working here when a new class of drugs called protease inhibitors was developed. Initially the only medication was a drug called AZT, which wasn't very effective in some cases. In the four years I have worked here, ten new protease inhibitors have been developed to help stop the replication of the virus. Right now AIDS patients have a larger and more effective pool of treatment options than ever before. When I started, two of our clients died within three months. Thanks to the advent of these inhibitors, it was two and a half years before another client died. Today, more people also recognize AIDS asa significant problem, and because of this, funding has increased, allowing us to conduct more prevention programs to stop its spread.
What services does your program provide to patients with HIV/AIDS, and what does it do to prevent the spread of AIDS?
Our primary service to people with HIV/AIDS is case management. We help clients find resources, including doctors, pharmacies and housing, and we even provide career counseling to patients who have lost their jobs because of their diagnosis. We maintain support groups for clients and their families, and we help patients sign up for any health benefits they qualify for, such as Medicaid. We also help clients with emergency funds when they can't afford to pay for drugs or other therapies.
As far as prevention goes, we have a twofold approach. First, we promote community awareness through displays, brochures and other items. We also have community speakers who talk to groups about HIV/AIDS. Our second approach focuses on at-risk populations. We work one-on-one to see what we can do to lower their risk for contracting HIV. We also provide materials to help stop the spread of HIV.
How many clients do you serve?
We serve about 50 clients and their families at anyone time. We also aid countless people through talks delivered to community groups.
How do you fund all these services?
Most of our funding comes from the Kansas Department of Health and Environment, which receives federal grants from the Center for Disease Control, and the Ryan White Care Act, which provides grants for case management. We also get money from the United Way, private grants and community-based fundraising.
Day today, what do you do?
Most of my work is pulling together resources, applying for grants and writing reports. I also coordinate fundraising, manage personnel and provide support for the staff. I also manage financial records and handle public relations.
Are volunteers important?
Volunteers are essential. We were founded by volunteers eleven years ago and run by them until 1993. Their role has changed, but they are still very important. There are 90 volunteers who do everything from office work to direct client interaction. They are also critical in our education programs, since most of our speakers are volunteers. Everything we do involves them; we could not manage without volunteers.
How does the AIDS epidemic in Third World countries compare with the problem in developed nations, and how will it impact the world?
The epidemic in the Third World is a whole different picture. We are fortunate to have a good quality of life and easy access to health care and treatment. The Third World has no health care network and barely any government funding. For example, our clients pay up to $2000 a month for medication; in sub-Saharan Africa the average person pays $12 a year for healthcare. They could barely buy a day's worth of HIV treatment, let alone a whole regimen. There is hardly any HIV/AIDS education because of cultural barriers, stereotyping and a severe lack of funding.
HIV is not a high priority as far as African governments are concerned, despite the fact that in some areas one in three adults has it. Each year hundreds of thousands of kids are orphaned as a result of this terrible virus. By 2010 the average life expectancy in sub-Saharan Africa will drop from 70 years to 33 as a result of HIV. Skilled workers are dying faster than they can be replaced, and even teachers are dying, resulting in African children not being able to take the place of skilled workers. All the progress Africa has made this century will be negated as more and more skilled workers succumb to the disease. As a result, the African economy may collapse, causing financial instability across the globe. There is a big push in the developed world to send more resources to Africa for prevention and treatment, but even then it would probably take 20-30 years for recovery to start.
Has public perception of the epidemic changed?Do people think AIDS is under control?
I think the perception has changed in a way that is both good and bad. It's good because the public does not fear HIV-positive people. Prior to the discovery that AIDS was a sexually transmitted disease, HIV patients were isolated from friends and family fearful of catching the disease. People have realized it is safe to be around HIV-positive patients.
Another perception that has changed is the view that HIV-patients are frail, and that an HIV diagnosis is a death sentence. Now since you see people with HIV who still appear healthy, people no longer associate HIV with death. My concern is that people don't see HIV as a crisis anymore, so they are more lax about protecting themselves.
My biggest concern is young adults who have never lived in a world without AIDS. When I was 25, AIDS was just emerging, and we were more cautious. Young people today have never known a world without HIV, and don't protect themselves against it. The population under 25 accounts for 50%of all new AIDS diagnoses. Another concern is that young adults having unprotected sex assume that if they do contract HIV, all they have to do is take a pill to have it under control. It's not that easy, they don't understand that using the drug cocktails we have today requires the patient to take over 30 pills at very strict intervals. Their lives revolve around taking the drugs.
How effective are the drug cocktails to keep HIV under control? Will they continue to work in the future, or will HIV develop a resistance?
Science is in a race to stay ahead of the virus. Right now medication can keep it in remission, but HIV replicates over a million times a day, and every time it replicates with medicine in the system, it can develop a resistance. We have 15 different drug cocktails, and even now some patients aren't responding. If someone contracts HIV from a person with a resistant virus, their virus is also resistant. Scientists are racing to discover new treatments and preserve the precarious balance between medicine and the disease. If they fail, we'll be right back where we started. We're all crossing our fingers that that doesn't happen.
Are you planning to continue the battle against HIV, or do you have other plans for the future?
I don't have any immediate plans, and even if I did make a career change, the passion would still be there, be-cause I don't believe that once you've learned ... once you've seen lives touched ... you can't just walk away. I would definitely continue working to fight AIDS in some way.
I would love to work myself out of a job, but I don't see that happening soon. Young adults today can tell you all about AIDS and its effects, but they don't always take precautions. I'm trying, but I don't see my task completed anytime soon.