The HIV community is well acquainted with the AIDS Drug Assistance Program (ADAP) crisis here in the U.S. Currently, 7,299 people living with HIV are on ADAP waiting lists. That number, 7,299, is more than just a statistic; it represents real people who live in fear of what will happen if they cannot receive the life-saving medications that they so desperately need.
To put a face to the crisis, three recent graduates from Northwestern University's Medill School of Journalism made adapting, a new short documentary film that gives us a peek at what it's like to be HIV positive and dependant on ADAP for HIV medications in the state of Illinois. The film follows two positive people: Will Wilson, a tour bus guide in Chicago, and Evany Turk, a mother of seven. The two share their experiences struggling to afford their medications and make ends meet. They highlight the medical and financial sacrifices they have made in order to be able to afford these meds.
"Life costs money and trying to save your life costs money, so which one do you decide?" Turk asks in the documentary. "Before I got ADAP, there was a time when I decided not to get the medication, and the month that I didn't get it, I could feel myself getting very fatigued and very ill. But I decided to do harm, potentially do harm to myself, and not do harm to my kids."
Focusing on Illinois seems fitting given the state's current ADAP issues.
Earlier this year, the program's eligibility requirement was radically lowered in hopes of balancing its budget and addressing cuts in its funding. Now, an applicant's annual income must be $32,670 or less in order to qualify, whereas before, the income cutoff was $54,450. This change could seriously impact a portion of the 4,200 Illinois residents who depend on the state for their life-saving medications.
Recently, I spoke to Bernie Lubell, Michelle Schaefer and Shari' Welton, the filmmakers behind adapting.
Kellee Terrell: How did the film come about?
Michelle Schaefer: At Northwestern, we were enrolled in a documentary film course and had to pick a topic for a film. Previously, I had worked with AIDS Foundation Chicago when I was covering cutbacks in Illinois with ADAP. That's how I met Will and I really felt for him. I found myself just sitting with him and talking, way longer than what was needed for that particular article. I spoke to him about his struggle to be able to afford medications. These were all issues that I just wasn't aware of. So when we were asked to create a documentary, I definitely wanted to revisit this topic.
Kellee Terrell: With stigma being so prevalent, was it difficult for you three to find other people living with HIV who were willing to take part in the film?
Bernie Lubell: One of the reasons we chose this topic was because it's not highly talked about, and surprisingly, people were so willing to come forward and tell their stories.
Kellee Terrell: Where has the film shown so far, and what are your future plans for it?
Bernie Lubell: Well, the film debuted at school in front of other students and staff and there was a great response. We received an email from someone who works in the university's financial aid and they said that they were so touched by it. This documentary really pulled on the heartstrings of people, because it tells real stories.
Michelle Schaefer: Going forward, we have been looking at trying to enter the film in some film festivals, continue to keep it posted online and hopefully use it for advocacy.
Kellee Terrell: What do you hope that people take away from this film?
Shari' Welton: I really want people to understand that AIDS awareness goes beyond one particular group of people, age, color and creed. Everyone can be affected by this disease, and at some point we all need to be less selfish. I hope people who see this film will be inspired to do something.
View adapting in its entirety below:
How many of you can relate to their experiences? What are your thoughts about this film?
Follow Kellee on Twitter: @kelleent.