On World AIDS Day, Dec. 1, Friends of AIDS CARE will mark 20 years of fund-raising with "Raise Your Voice, Sweet Sounds," a benefit for A Positive Place (formerly AIDS CARE/Hampshire County), at 7 p.m., at the Academy of Music, in Northampton. Performers include award-winning Broadway star Nick Adams, legendary jazz and inspirational vocalist Evelyn Harris (formerly of Sweet...
On World AIDS Day, Dec. 1, Friends of AIDS CARE will mark 20 years of fund-raising with "Raise Your Voice, Sweet Sounds," a benefit for A Positive Place (formerly AIDS CARE/Hampshire County), at 7 p.m., at the Academy of Music, in Northampton.
Performers include award-winning Broadway star Nick Adams, legendary jazz and inspirational vocalist Evelyn Harris (formerly of Sweet Honey in the Rock), and Michelle Brooks-Thompson, of Sunderland, an a 2012 finalist on NBC's "The Voice." The Amandla Chorus will open for the performers.
Tickets range from $25 to $50, and are available at http://www.academyofmusic.org/home.php or by calling the box office at (413) 584-9032 ext. 105.
A pre-concert reception will be available in the theater's salon, from 5:30 to 6:30 p.m.. Tickets for the reception are $50.
A Positive Place provides comprehensive support for people living with HIV/AIDS in Hampshire County and the surrounding area. It is a program of Cooley Dickinson Hospital. For more information, Call (413) 586-8288.
According to the government's Centers for Disease Control, "HIV stands for human immunodeficiency virus. It is the virus that can lead to acquired immunodeficiency syndrome, or AIDS. Unlike some other viruses, the human body cannot get rid of HIV. That means that once you have HIV, you have it for life."
An estimated 1.1 million people are living with HIV in the United States. The virus is contracted through body fluids, such as in unprotected sex , a being born to an infected mother, or sharing needles with someone who is HIV positive. Being HIV positive means someone has been exposed to the AIDS virus. HIV drugs today can help slow, or prevent, this diagnosis from being AIDS.
Betsy Shally-Jensen, director of A Positive Place, was asked to what extent there remains an awareness about HIV/AIDS, among the general population.
HIV/AIDS was once a global headline, in terms of being a fatal epidemic. To what extent has this medical epidemic been addressed in terms of treatment?
Major advancements in medication regimens, combined with new national strategies and social policies, do make real the promise of an AIDS-free generation. The Centers for Disease Control & Prevention has recently likened HIV/AIDS to a chronic disease, rather than a fatal disease, or as it was referred to in the early years of the virus, a “death sentence.”
Many medications today consist of single tablets pills, taken once per day versus a “cocktail” of multiple pills with harsh side effects, taken several times a day. All this makes it easier to adhere to life-saving drugs, which keep the virus at bay –ultimately, improving the quality of life for HIV positive folks, and reducing their risk of spreading the virus to others.
There are also very recent advancements in prevention medications for HIV negative partners, and others at high risk of contracting the disease. Pre-exposure Prophylaxis, or PrEP, has been proven to reduce the risk of infection. Also, getting people into care, and starting medications early is a part of the new treatment strategy to end the epidemic. And then there are so many exciting new trials, including microbicides and rings for women that protect against pregnancy and HIV/STIs. The treatment side of ending the epidemic is light years beyond those early cocktails.
Our job, as an AIDS service organization working to end the epidemic, is to make sure people get linked to care early, stay in care, take their medications, engage in safe sex, disclose their status to partners, etc. At A Positive Place, we have developed an interdisciplinary HIV care team, and provide a kind of medical home for people living with HIV, such that 100 percent of our clients are linked to care, 98 percent are retained in care, 98 percent are on medications, and 87 percent of our clients have an undetectable viral load.
Of course, medical advancements are of little consequence if someone is unaware of their status – and about 18 to 20 percent of people who are infected don’t know they are. “Treatment” for a “medical epidemic” needs to promote prevention strategies, such as the call for “universal testing” in primary care offices, so that everyone can know their status, and get linked to care early.
This is something that we are focusing on at A Positive Place, with the help of Cooley
Dickinson Hospital-affiliated infectious disease specialists Dr. Joanne Levin, and Dr. William Swiggard. Our goal is to offer universal testing, with the hospital's affiliate practices, and then move onto other primary care physician offices.
So “treatment” can and does stem the tide of an epidemic, as it saves lives and maintains health, but only if one has access to health care, and is prescribed and can afford the astronomical cost of the drugs.
Sadly, unequal access to quality medical care, and other social determinants of health, create health inequities based on race, gender identity, ethnicity, and sexual orientation across the globe and in the Pioneer Valley.
At a Positive Place, gay and bisexual men, African Americans, and Latinos are disproportionately represented, and have less access to quality care and poorer health outcomes. We are doing everything we can here to eliminate such disparities by addressing social determinants of health, such as housing support and advocacy, medical transportation, income entitlements, health insurance and drug reimbursement for everyone. Next year we’d like to see 100 percent of our clients linked and retained in care, on medications, and living with an undetectable viral load.
Have the advances in treatment hidden the threat of the disease?
I think there is some of that, yes. Maybe because advances in medical treatment get the limelight, where social determinants of health do not, HIV/AIDS seems to have fallen by the wayside, as other equally critical social issues - employment and housing discrimination, marriage equality, etc. take center stage. But the hidden threats of loss of employment due to illness, loss of income and housing, an early aging process, co-morbidities, and the on-going sting of stigma loom large.
I can’t emphasize enough how prevalent and hurtful the stigma still is today, and how much it impacts the lives of people we serve daily. People are concerned about coming into our offices for fear that others will see where they are going; so we changed our agency name at the requests of many of our clients.
HIV positive people share stories daily of losing jobs, being denied housing, being “disowned” by family members, or having coffee cups thrown away after their use rather than put in a dishwasher with the rest, due to stigma. Even some medical providers treat people living with HIV with such unnecessary caution (masks and robes along with gloves), that they are made to feel “untouchable.”
At A Positive Place, we also sometimes encounter a kind of complacency about the virus from clients - especially among some of our younger clients – or a sense of “resignation” that eventually they will become infected, so “why not get it over with” so that they can move on with their lives, safe and sound with medication. There is less awareness that living with HIV - however “manageable” it is today - changes your entire way of life.
In our community, to what extent are people continuing to contract, and die from the disease?
Over the past 10 years, HIV/AIDS health service providers, together with education and prevention centers, have helped to drastically reduce the rate of new infections in the Commonwealth, and to maintain the health of those living with the virus, so that they enjoy longer, fuller lives. We have virtually eliminated perinatal infections.
This all may begin to change as we have seen Draconian cuts in prevention and education funds in the last two years in Massachusetts. The sad irony is that we expect to lose millions more, as funds are funneled out of states, like Massachusetts, which successfully managed to decrease incidence rates, with innovative prevention strategies, and targeted for those states and locales where HIV rates and risk of transmission are higher due to inaction.
What we are beginning to see more with our clients here are earlier than expected deaths from diseases, like cancer and heart disease, as the HIV virus interacts in very complicated ways with other illnesses.
Who is at most risk for contracting HIV?
As in the nation, here in Western Massachusetts and at A Positive Place, where we serve HIV positive people from all five counties, those most at risk for contracting HIV are members of historically marginalized communities, including members of the LGBT (lesbian, gay, bisexual, transgender) community, African Americans, Latinos, and intravenous drug users. Of the top 10 cities in Massachusetts, with the greatest number of HIV infection diagnoses in the years 2009 to 2011, Springfield is Number 2, following Boston.
What services are available in terms of education and outreach. Is funding an issue?
Clearly, funding for community education/outreach is a huge issue. What is called “primary” prevention” work – activities employed to prevent a disease from occurring – consists of those very services that, unwisely, are cut first. They include confidential testing and counseling, needle exchanges, targeted and culturally appropriate public awareness campaigns, HIV/AIDS Awareness curricula in schools, etc. These services are still available in our area, but limited by cuts in funding.
Available services that have incurred smaller budget cuts are those which offer secondary and tertiary prevention, targeting the person who already has the disease.
“Prevention work with Positives,” as we call it, includes risk reduction support, behavioral interventions, help with status disclosure to friends and family, partner services, and those services which support retention in care and adherence to medications, such as social and medical case management and peer support.
Providing all these services in homes, hospitals, the street, and places other than an office, as well as on weekends and/or after hours is important. And, remembering that you can’t “educate” someone who is hungry, homeless, high, or traumatized also requires that housing support and advocacy, income and benefits support, emergency food assistance and transportation must be a part of the “prevention” plan.
How knowledge are young people about the virus, and how it is contracted?
I imagine that younger people know less than they did a decade ago, as funding for education in schools and other public awareness campaigns have dwindled. But, young and old alike, there is a big difference between knowing how the virus is contracted and protecting yourself and others!
What needs to be done in terms of education and prevention?
As the Centers for Disease Control & Prevention recommends, everyone between the ages of 18 through 65 should be tested for HIV. Testing should be universal by now in Massachusetts; that is,a part of everyone’s primary care routine, and it should be implemented as an “opt out” option rather than having to ask for it.
HIV education and prevention should be closely linked to education around other sexually transmitted infections (STIs), and around Hep C, which is the fastest growing epidemic in the country. While other STIs are more easily contracted in a first encounter than HIV, once infected with another STI, people are more susceptible to contracting HIV.
Here are a few steps local residents can take to help educate our community and raise awareness:
• Invite a prevention/worker from a local AIDS service organization to come to your office, church, school, library, civic association, etc., to share information about HIV transmission and living with the virus. Role model compassion and support, versus stigma and judgment around people living with the virus.
• Donate to agencies that help people living with HIV/AIDS – whose budgets are cut annually. Call your legislators, both at the federal and state levels, during budget season, and ask them to spare HIV funds for prevention work and health services work.
Why is it important to observe World AIDS DAY?
It is important to observe World AIDS Day because HIV/AIDS is still an epidemic, and until there is a cure and an AIDS-free generation, every day is World AIDS Day for too many of us.
What interested you in getting involved in AIDS services.
I was trained as an anthropologist, and for about 25 years I applied the tools of my trade to social justice efforts focused on political, gendered, and family violence. Then on June 10, 2008 my daughter’s biological mother, my soul mate, passed away from AIDS. She was 36. I was moved to follow a new path, and by November 2008, I was working at A Positive Place as its third director, since its founding in 1991.
Betsy Shally-Jensen, holds a doctorate from Princeton, and is certified in diversity management in healthcare, from Simmons College in Boston, and the Institute for Diversity in Health Management, an affiliate of the American Hospital Association.
Related:
http://www.cdc.gov/hiv/
http://www.cooley-dickinson.org/Main/AIDSCAREHampshireCounty.aspx