policy

The HIV Organ Policy Equity Act: Spreading HOPE

I pushed down on the edge of the worn fabric of the auditorium seat and felt the metal frame push back on my fingertips. The white foam of the cushion peeked through the red threads of the dusty seat. Scanning across the auditorium, my eyes took note of the press personnel and cameras pointed towards the stage. I sat in awe during the live media briefing where my mentors announced that the first HIV-to-HIV liver transplant in the world was just successfully performed at our transplant center. “In 2008, Dr. Elmi Muller was the first surgeon in the world to perform HIV positive-to-HIV positive deceased donor kidney transplantation.” In 2008, Dr. Elmi Muller was the first surgeon in the world to perform HIV positive-to-HIV positive (HIV-to-HIV) deceased donor kidney transplantation. Recognizing the tremendous impact this could have in the US, my research group (Epidemiology Research Group in Organ Transplantation, ERGOT) wrote the landmark HIV Organ Policy Equity Act (HOPE Act), which reversed a long outdated ban on HIV-to-HIV organ transplantation, created in the 1980s. ERGOT shepherded the passage of the HOPE Act through Congressional and Presidential approval in November 2013. “Signed into law November 2013 and implemented in November 2015, the HOPE Act opened the door for HIV-positive candidates to receive and donate organs.” Today, HOPE transplants are taking place in the US, UK, and South Africa. For World’s AIDS Day 2018,...

A Lesson from Research: Advocacy

In 2013, the office was abuzz with conversations about the HIV Organ Policy Equity (HOPE) Act. The HOPE Act would have significant implications for our work and was particularly relevant as former President Barack Obama planned to sign it into law a mere two months after I began working.   But despite its landmark significance, I was surprised to find that the HIV+ patient population was unaware of this law. More importantly, HIV+ patients’ willingness to accept HIV+ organs remained unknown. So, we developed a survey to understand patients’ attitudes towards HIV-to-HIV transplantation. Understanding these perspectives is paramount to gauging the level of support for the HIV-to-HIV organ donation program, specifically whether HIV+ patients are willing to accept HIV+ organs.   With the support of the Fulbright Scholarship, I continued this exploration on the knowledge of and attitudes toward HIV-to-HIV transplantation within the HIV+ population at the Groote Schuur Hospital in Cape Town, South Africa. Consolidating the evidence of countless interviews I had collected from both sides of the Atlantic Ocean, I recognized how easily biomedical science could remain within scientific journals without ever translating to the population we had in mind when designing the studies. Research, though valuable and critical, is limited if not accessible to the patients it hoped to benefit.   “Research, though valuable and critical, is limited if not accessible to the patients it hoped...

What It’s Like To Advocate For Healthcare

Make your voice heard. With the ongoing healthcare debate, we are told again and again how valuable our voices are as docs and almost docs. But how do we make our voices heard? One way is to call your representatives. Another is to visit them. A number of medical organizations coordinate annual advocacy days on Capitol Hill for their members to attend. The benefit of meeting in person with Congressional representatives and their staff is that it can help us put a face on the healthcare workforce and establish ourselves as experts in the care of patients. It can create lasting relationships with these representatives that gives us the power to speak for our patients. This year was my third time attending one of these advocacy days held by the American College of Physicians. Yet, I can still remember the uncertainty I felt as I arrived at Washington, DC as a first-year student. Who am I to speak on what ails our healthcare system? What if I don’t know the exact policies? Luckily, the first day was designed to get me up to speed. I received outlines for each issue we were advocating for, including current related bills we should ask our representatives to support. I listened to policy experts speak about the issues and how to best speak about them. I watched example discussions with representatives so that...

Why Health Advocacy Matters to Medical Students

The American Medical Association (AMA) endorses: Physicians must “advocate for the social, economic, educational, and political changes that ameliorate suffering and contribute to human well-being.”1 Canada has adopted a similar commitment. The Royal College of Physicians and Surgeons of Canada (RCPSC) and CanMEDS, a physician competency framework further elaborates the ways in which physicians are accountable to society when it comes to health advocacy: “described as responding to individual patient’s health needs by advocating within and beyond the clinical environment, and also to the needs of communities or populations for system-level change in a socially accountable manner.”2 Physicians are particularly well qualified to function as effective advocates for patient’s health. Not only do they understand the medical aspects of issues better than anyone else; they are also better able to observe and draw out the links between social factors and health. Physicians hold a high degree of trust with the public, as doctors are experts in their respective fields.  Therefore, “given their social standing, physicians enjoy an unusual degree of access to policy makers, to local and national leaders, and to citizens; thus, they possess a great deal of leverage in influencing public processes and priorities.”3 This is especially important in the world of pediatrics as often times our patients are those that are the most vulnerable in society and cannot advocate for themselves. This is precisely one of...

Tracking the Flu, One Thermometer At A Time

Since 2014 Kinsa has been promoting and developing their smart thermometers – a thermometer that links to your smartphone, allowing patients, parents or other healthcare professionals to record and track their temperature data over time. With this year’s record-breaking flu season, Kinsa’s smart thermometer has achieved critical mass, with Kinsa reporting up to 25,000 readings per day. With all this real-time data, Kinsa is claiming to be able to track flu season faster and more accurately than public health authorities, such as the CDC. Once your child has registered a temperature, Kinsa’s smartphone app gives helpful tips about how to treat and manage fever. But who else now knows that your child is sick? A happy side effect of having 500,000 smart thermometers in American households is a glut of data about who has a fever and where. Kinsa has a very savvy marketing team, and the company is monetizing not only their devices, but also their data. For example, Kinsa has created a school program, called “FLUency,” to market the devices to schools and parents. The FLUency program includes a school-specific app for parents to share symptoms, such as if their children are exhibiting coughing, sore throat, earache, etc. Kinsa has also developed “Kinsa Insights,” a reportal that sells access to Kinsa’s anonymized data, with the promise that Insights clients are getting the data directly from sick households, before...

Healthcare’s Future: What Happened Since The Election

The elections of 2016 brought about a significant change in the way American healthcare was run in the previous years. ObamaCare slowly took a toll as Donald Trump made his way into presidency: “’17 is going to be a disaster cost-wise for Obamacare. It’s going to explode in ’17.” (ABC News) According to Trump, the healthcare system of the United States needed a lot of work and that is exactly what the president was aiming at- a brighter future for healthcare. Over the years, the growth in presidency brought about a growth in the health plans of individual citizens, however, recently Trump raised an uproar in the repealing of ObamaCare. This post will discuss the major changes that have been brought about as Donald Trump took over presidency and whether or not the Republicans insight of ObamaCare brought success. Here we will discuss the aims, challenges and the proposals that was brought in by the elections. However, to understand how the healthcare system made drastic changes in the recent years, it’s important to first understand what exactly the ObamaCare was. What is ObamaCare? To put it in very simple terms, ObamaCare is a Patient Protection and Affordable Care Act made in 2010 which simply aims to make health insurance a mandatory option for every individual. Enacted by the 111th United States Congress, President Barak Obama finally turned it into a...

In Light of Recent Events: How CPR Can Help With Saving Lives

As a writer for this blog, I’m going to take this opportunity to discuss a topic that is not covered enough at most schools, and in society in general. I’m sure as most of you know, since the beginning of the year 2000, the United States has had a stunning increase in annual terrorist attacks, i.e. mass casualty incidents, in the eyes of health care providers. There have been over 400 documented terrorism-related cases and charges since 9/11/2001. Terrorist attacks such as the Virginia Tech, Columbine, San Bernardino, and Sandy Hook school shootings have left this country in a state of shock. Horrifyingly enough, the two deadliest shootings in modern U.S. history have occurred on 6/12/2016 and 10/1/2017, both in the past two years. The Pulse Night Club shooting led to the loss of at least 49 lives, with over 50 others injured. The Las Vegas shooting, which happened recently, left at least 58 people dead, and over 515 others injured. Take a moment and just re-read those last few sentences, let it sink in. Situations like these overwhelm the country, from both a medical and emotional standpoint, on a basis that is way to frequent for comfort. Many people will tell us that there’s really nothing we can do as “just pre-med students”, and they’re completely wrong. As a paramedic, there are 3 life-saving techniques that I think every...

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