If I lived in any other country, I wouldn’t have graduated high school. I was born with a genetic condition called Cystic Fibrosis (CF). It’s a full body disease that makes the cells in my body unable to process salt. The main issue is that the mucus in my body becomes thick and sticky. The mucus gives bacteria the ability to stay in an ideal spot to survive in my lungs.
When I was 16 my health took a turn for the worse and I was hospitalized during the summer before my junior year of high school. I spent a month at a hospital which I will leave unnamed due to their terrible incompetence. My mom and I wanted alternate solutions so we transferred to Boston.
Boston is world-renowned for their CF treatments. They have doctors who specialize and deal with CF all day every day. Boston was incredible, it was a night and day difference. Boston went to square one. “What if we knew nothing about his condition, what would we test for, what could it be if he didn’t have CF.” I did a lot of weird tests. They did my blood and found my B cells were low which they thought could be due to infection as they do drop when you’re sick. They decided to treat it anyway just to be safe. This caused me to start responding to the antibiotic. It took 3 months of hell to figure it out. I thought I was going to die there. I remember thinking, “the only way I’m leaving here is through the morgue.” After the ordeal they told me that they were using me as a case study.
My condition is now stable because I’m on a new drug called Trikafta, developed by Vertex Pharmaceuticals, based in Boston. Trikafta costs around $24,000 for a month’s dose.
The reason I told you about my health issues is so you can understand that I have gone through a lot and seen a lot of the health care industry. In America when someone has an issue it is treated fast and you are not turned away if the procedures are expensive. This does mean, however, that you may have to pay the bill yourself.
The main reason people want a universal/one-payer system is that it helps those who don’t have much money. The government pays for the service as a basic right. The problem is that since the government pays for it they get involved. They need to determine whether any treatments are necessary and how much it will cost. This is what it’s like in the EU and UK. I have a friend in the UK who has many medical issues and he says it takes months to even talk to a doctor. Red tape is fine for items that aren’t urgent but your health is urgent.
The one thing I want you to take away is that for-profit pharmaceutical companies are actually a good thing. In single-payer systems you would find in Canada and the EU prices are controlled. The government dictates the price of medicines. In America, health care is expensive for patients but profitable for hospitals and pharmaceutical companies. Since there is a large incentive they are able and willing to innovate. The EU focuses on treatment for the masses. They want universal access to medicine. This means all treatments and medicines are easy to get and cheap. The downside is it is not fast and sometimes you can’t get the right treatment. They are focused on helping the majority. Rare or expensive conditions aren’t worth it. The EU’s policy is essentially, “Why help 1 person do great when you can help 100 people stay on their feet?” Their system is like McDonald’s. It’s cheap and does the job.
In America the focus is on helping everyone that walks through the door. America will treat everyone and help them live their best life. The problem is they’ll only help if you can pay. If it wasn’t for insurance, those 3 months in the hospital would have me spending a lot of hours washing dishes to pay back the $1.2 million I owed. The problem is not everyone has insurance. It’s not uncommon to hear someone who died refusing an ambulance or treatment to avoid the bill. This to me is unacceptable.
The whole reason Vertex created Trikafta was because of something called venture philanthropy. The CF Foundation is a nonprofit that paid Vertex to research treatments that no other companies were interested in doing. Most nonprofits focused on academic and medical research. Before the CF Foundation paid Vertex there was not even a thought of a cure or even new treatments. Vertex was about to close down the team working on CF before the CF Foundation intervened. This intervention convinced the company that there was a reward worth the risk. $40 million in 2000 was what it took for them to take the plunge. 12 years later they have given me a chance at life that others didn’t have.
CF was discovered in 1938 and in 1955 the CF Foundation was established. Back then kids weren’t expected to survive to attend elementary school. I met a nurse who told me that she was told in nursing school not to get attached to CF patients for that reason. The average life expectancy of Americans is 77 years. People with CF had a life expectancy of 30. I am 25 right now. I would have only 5 years left to live life.
America is what allowed me to live. The current health care system is why I am alive. We must find a balance between letting companies pursue innovative treatments for profit and ensuring better access to treatments for everyone. America and Europe both have flawed systems. Together we can build a system that works better. We don’t need to destroy the whole house. We can renovate the system, we don’t need to demolish it.
Luke Shepherd is a third year student at Central Connecticut State University, majoring in public relations.