The Community Control of Health conference hosted by ACT UP Philadelphia was moved from August 31 to February 8. ACT UP Philadelphia Organizer Jose de Marco said the date change was to ensure the conference drew larger numbers. “This is a discussion about community-controlled health care and you need the majority of the community there to have that discussion.” He said that the projected turn out was not as big as he had hoped, likely due to Labor Day.
The free one-day conference for HIV-positive QTPOC will provide “space to discuss issues and concerns that center the individual and collective experiences of people living with HIV/AIDS who are Black and Brown.”
ACT UP is an international diverse and nonpartisan group committed to ending the AIDS crisis through direct action with a chapter locally and in Boston, Chicago, New York and several other cities.
The conference includes several other organizations such as the Black and Brown Workers Co-op and Gran Varones. Workshops will be offered that “provide information and present concepts that interrogate how white supremacy shows up in the healthcare/medical systems and how the monetization of illness stifles radical approaches to ending the epidemic.”
A 2015 study by the American Public Health Association indicated that “implicit bias was significantly related to patient-provider interactions, treatment decisions, treatment adherence, and patient health outcomes. Most health care providers appear to have an implicit bias in terms of positive attitudes toward Whites and negative attitudes toward people of color.”
An Act Up committee that shares the same name as the conference aims to create a “patient-first and patient-vote model of care.” De Marco explained that a “patient-center and patient-vote care model” means that a patient gets a say in and control over their health care. When a patient seeks treatment, they should know all available options and have the freedom to decide from a variety of treatments including ancestor remedies and complementary therapies. Instead of coming in and receiving medication, the doctor or care provider should be transparent, giving the patient a choice in care.
De Marco said this model would also give patients access to personal health information. De Marco provided an anecdote about a Black HIV-positive man who had 14 vials of blood drawn during a visit to the doctor, and when he asked why so many vials were needed, he was told if he didn’t get the blood drawn, he wouldn’t receive his medication. The committee and conference seek to empower patients in these types of situations.
De Marco noted that people of color are the demographic most affected by HIV and AIDS. In 2017, the CDC reported that Black and Hispanic men had the biggest influx of new HIV diagnoses — 9,807 Black men and 7,436 Hispanic men received the diagnosis in 2017.
De Marco said the staff at HIV/AIDS organizations should be reflective of the communities they are serving.
ACT UP meets every Monday night (except major holidays) from 6-9 p.m. in the basement of Saint Luke’s Church in Center City, 330 S. 13th St.