In 1998, Ken was diagnosed with human immunodeficiency virus (HIV) in his early 30s. At the time, patients diagnosed with HIV had a predicted remaining lifespan of about 6-8 years and there wasn’t much research on the condition. Soon after his diagnosis, Ken decided he wanted to participate in research to help as many people and generations he could in the time he had left.
Ken participated in a clinical trial study for over 5 years. The side effects were horrendous and included abdominal cramping, nausea, and emotional pain. However the study was successful in concluding that rather than 4 separate drugs, HIV treatment could be effective with 3. This would make it easier for patients to manage their treatment.
Ken describes the years after he was first diagnosed as a very challenging and painful time. He felt very isolated, stigmatized, and damaged- like there was something very wrong with him. He was always wondering how he was being perceived by others and felt ashamed at the doctors office. Ken felt like pain and death were inevitable with his diagnosis.
Ken had an epiphany during his patient journey- he finally asked himself if he was living to take medication or taking medication to live. With this mindset, he had the opportunity to make a worldwide impact. He decided he wanted to be a role model for others that were diagnosed.
This change in mindset took 5 years and culminated with a career change. Ken went back to school to become a nurse and stopped taking medications against medical advice. His medical team agreed to monitor his CD4 levels and decided that if levels dropped significantly, he would get back on the medication regimen. Ken’s CD4 levels plateaued and he went 36 months without medication. Ken was at top of his class throughout his time in nursing school even though he’d never even taken a science class before!
3 years later, Ken took Atripla, which was the equivalent of 3 HIV medications consolidated into one pill. Now, he takes Triumeq, which has few side effects if any. Ken supports other HIV patients and runs various clinical trials. He says that helping others with HIV has also helped him heal and process his own condition.
Ken’s diagnosis changed his life and gave him a new purpose. He has worked in the HIV community for over 11 years now. Treatment and quality of life for patients with HIV has changed remarkably since Ken was first diagnosed. He has experienced firsthand the benefits of medical advancements, which is why he is so passionate about participating in and facilitating research. Ken believes that Sanguine is revolutionizing medical research by bringing studies to patients’ homes and making it more convenient and easier than ever to participate. He is optimistic about the future of HIV treatment and is thankful that Sanguine advocates and empowers patients to make an impact.
