From the Desk of Chuck Peterson
Honoring Our Past and Looking Towards the Future
It has been 40 years since the first five cases of what later would be known as AIDS were officially reported. I was 19 at the time. In the years that followed I watched the impact this horrible disease had on families, friends and in particular, the gay community. People were dying and it seemed there was nothing we could do about it. It was 1987 when Larry Kramer began shouting as loud as he could that we needed to fight for our lives and for our dignity.
For some of us those first decades were simultaneously tragic and heroic. Activists were radically changing medical and research institutions from the ground up while many in the LGBTQIA+ community united to support each other and care for their dying lovers and friends. We came together and took care of each other when no one else would do it.
In 1990, The Phoenix Body Positive opened its doors. We supported those newly diagnosed with AIDS as well as their family and friends. But as the years passed, our world as we knew it started to change – people were not dying as quickly and significant medical advances were being made. The development of antiretroviral drugs in the mid-1990’s completely turned around the AIDS epidemic. We celebrated.
Forty years after the start of the AIDS epidemic it is no longer a death sentence. Doctors can prescribe medications that reduce the amount of AIDS virus in a patients' body to undetectable levels. Most people who do receive a positive diagnosis can live long and healthy lives and the rate of new HIV infections has plummeted nationwide. But even with these medical advancements, only about one in four Americans with HIV has their virus controlled, according to the Centers for Disease Control and Prevention. In addition, HIV continues to have a disproportionate impact on certain populations, particularly the BIPOC communities as well as the gay, bisexual and other men who have sex with men.
After 40 years we continue to honor the strength, courage, and endurance of all people living with HIV/AIDS, particularly the long-term survivors like Don, who you will read about in this edition of our blog. His strength is a testament to our progress in developing powerful anti-HIV drugs, and a beacon of hope in our fight to one day end this deadly disease.
On behalf of our patients, clients, staff, and Board of Directors, we thank the community for its continued support. We could not do this work without you.
AIDS at 40: My Perspective as a Long-term Survivor
By Don Kline
When I was diagnosed in 1987, I was healthy and had little fear of the disease. I attended a support group in Ann Arbor, Michigan, where I lived and worked, volunteered at the local HIV Resource Center, maintained a healthy lifestyle, and had the support of a partner and friends and excellent medical care. However well I felt in the subsequent years, HIV progressed to AIDS and my health did begin to suffer until, in 1995, I simply could not muster the energy to continue working. My mental state was so stressed, I found it ever more difficult to concentrate and contribute to my career. I did experience only a few illnesses over those years, one incapacitating me for two weeks, something that had never happened in my entire life. Those few illnesses, my increasing fatigue and inability to think clearly were the point in my life that I began to feel that my life was nearing an end.
Thus, in April 1995, with the support of my employer and my doctors, I took disability retirement as the only viable alternative to trying to struggle to manage my very life. My T4 cell count had dropped to just 3, then 1. I had named my last soldier T cells, Aloysius, Zenon and Fred, and shortly after retiring, only Fred remained with me. By that time, and even without any serious complications, I began to feel that my days were numbered and, with the prevailing medical wisdom of that time, it seemed inevitable that I would surely die within a year, or sooner.
A month-long trip with my partner to Kenya on safari and then to Egypt was what I thought would be my last hurrah. And yet, I continued to live. Increasing tensions at home then prompted me to seek refuge in a warmer climate, away from the approaching winter dreariness of Michigan. A long escape to the Southwest, a spiritual retreat in Sedona and then to Phoenix, led me to Phoenix Body Positive where I strived to contribute whatever talents I could to be of help to others in this community. Body Positive became a refuge for me that allowed me to begin regaining my emotional and mental strengths and allowed me to find a supportive social group, many who are still good friends. I continued my medical care with a Phoenix HIV doctor who prescribed the newly released protease inhibitor, Saquinavir. Protease inhibitors were the latest category of HIV meds that promised significant improvements for those of us living with HIV. At that time, HIV viral loads were also being included in the lab work to determine the amount of the virus that was present in the blood stream, and mine was over 100,000. Still, with a low T4 count and a high VL, I was feeling better in the warm winter climate of Arizona. The feelings of preparing for my end were diminishing.
In the springtime I returned to Michigan and began my transition to living alone while regaining my strength and confidence. My follow up visit to my HIV doctor revealed that the saquinavir was not at all effective as my VL had soared to 1.5 million. As my doctor said, “it went into orbit”. But a second protease inhibitor that he prescribed, quickly turned it all around and continually lowered my VL over the next months, 500,000, 100,000, 10,000 and then undetectable. Added to this good news was my T4 counts also began to multiply. Zenon and Aloysius rejoined Fred and a new healthy troupe of T4 cells that all helped strengthen me, make me feel better about myself, my capabilities and my future. Back in Michigan, my health continued to improve as did my outlook on life.
That first winter escape prompted me to plan to return to Arizona the following winter, and then to relocate permanently in 1998. On each return I came back to Body Positive to volunteer, and upon my permanent residency here I began volunteering in the Clinical Trials Department until we closed that service in 2015. Over the years, as Body Positive became Southwest Center for HIV/AIDs, I have found my services here to be beneficial and rewarding for the agency and myself. Working in such a supportive and rewarding environment has helped me gain confidence and reestablish myself. Today I continue to contribute to Southwest Center’s mission by providing crucial support for our accounting and human resources needs as well as helping to serve weekly men’s luncheons. As a long-term survivor and long-time employee of Southwest Center, I’ve become a source for history for our staff.
Once unsure of my future, at 73, I now see a fulfilling life ahead. My advice to those living with HIV today is:
HIV is not a death sentence. While it is an illness you need to take seriously, don’t be afraid of it and don’t give up hope! Take one day at a time.
Take good care of your body and mind. Stay physically active, eat well, and keep a positive attitude. Hiking, yoga and meditation helps me feel my best.
Be grateful for what you have. For me, this includes friends, family, meaningful work and the beauty and peace I find in nature.
Be strong and have confidence in yourself and in your abilities.
Most importantly, I want everyone to know that you don’t have to do this alone. Whether you are looking for HIV treatment, gender affirming care, mental health services or empowerment programs, the Southwest Center has resources to help you.
Staff Spotlight
Outreach Team
Say hello to two of our newest outreach staff!
Blast (they/fae) is our Outreach Specialist, and used to be a volunteer firefighter and EMT in their hometown!
Gianni (he/she/they) is our Bilingual Outreach Specialist. Also known as Zara Stevens, he is the biggest cat lady you’ll ever meet
We are so excited to have them both on board and for them to do amazing outreach work. Feel free to say hi when you see them out in the community.
Client Care Coordinators
We want to give a huge shoutout to our Client Care Coordinators located at the front desk of the Southwest Center. As the first and last staff clients see, they go out of their way to provide an exceptional experience and are an essential part of client care. Their amazing work allows the Center to thrive and continue to serve our community. Call to schedule your appt at 602.307.5330.
Thanks again, Jamie, Roymy, and Jennifer for your tireless work! You mean so much to us and our community!
Pride at the Southwest Center
On June 28, 1970, thousands gathered in New York City on the one-year anniversary of the Stonewall Riots for the first annual NYC Pride March to demonstrate against to community’s lack of basic civil rights. Since then, Pride has grown from a single day to an entire month, from one community to across the world. In most years, June is filled with activities to celebrate the LGBTQ+ community, remember those who we have lost to HIV/AIDS or to hate crimes, advocate for LGBTQ+ rights, and commemorate the impact that LGBTQ+ individuals have had throughout history. Although COVID-19 has temporarily changed how we celebrate, not even a pandemic could dampen the momentum of Pride.
June has also provided the Southwest Center the opportunity to celebrate, grow and build toward our future. We have return to offering walk-in visits, HIV/STI testing and a broader array of services with three Nurse Practitioners on staff. We have also expanded our team of licensed clinical therapists to five to meet the growing need for mental health support. Our outreach team offers HIV testing at several establishments in our community, with a special lineup of testing events throughout the final week of June in honor of National HIV Testing Day on June 27. Throughout June, we have been gathering, reviewing and interpreting feedback received over the past five months of strategic planning to shape our mission, vision and values (look for more on our strategic planning in future blog posts).
All of this work we are doing – both the care we provide to clients and our community today, and our investment in planning for our future – ensures the Southwest Center will continue offering a safe, judgmental-free space for LGBTQIA+ individuals to receive medical care and wellness, providing culturally-competent, appropriate, and gender-affirming care, and being a regional leader in HIV/AIDS treatment and prevention services, to support efforts to end the epidemic.