I am angry, scared and helpless.
I’m afraid Donald Trump and the Republican party think that my life, and the lives of others with chronic disease, are a waste. I am terrified that Elon Musk may cut funding for research that could save my life and that the newly appointed HHS Secretary Robert F. Kennedy Jr. may destroy public trust and support for scientific understanding.
When I was 16, I was diagnosed with epithelioid hemangioendothelioma. EHE is a rare, incurable cancer of the lining of blood vessels. One in a million people worldwide will be diagnosed with EHE, and half of those diagnosed will die from the disease within five years. I am now 22, which makes me one of the survivors of that coin toss. However, my cancer is still progressing.
I have over a dozen lesions in my liver and nodules in my lungs. With these tumors come chronic pain and inflammation in my ribs and back. There is no treatment available to me to combat the EHE in my body. Medications that have worked for others have not worked for me.
I am relying on cutting-edge medical research to save my life. Because EHE is so rare, it is unlikely that a private pharmaceutical company will bankroll clinical trials because they won’t have enough customers to turn a profit. For rare diseases like mine, publicly funded studies may be the only avenue for progress. Federal funding saves lives, and Trump and Musk look to cut it.
Musk’s strategy of moving fast and breaking things may work in business, but not in public health. Musk stated that if he makes a mistake, his team will work to fix it. However, as has been seen with cuts to U.S. Agency for International Development, temporary halts to funding can cause irreparable harm.
Musk and Trump also have little to no understanding of what they are cutting. In Trump’s joint address to Congress, he incorrectly stated that they had cut funding for “transgender mice.” What they cut, however, was a study involving transgenic mice that have altered DNA. The specific studies the White House referenced involved how hormones affect, among other things, asthma and breast cancer.
Studies working towards saving the lives of people like me might be cut without thorough consideration or compassion. I have little trust in Kennedy to stand up against public health cuts or to defend scientific understanding. He has already shown that he is willing to roll over and allow Musk and Trump to do what they wish.
Kennedy also stated that he wants to see a halt to all infectious disease research. Not only would this put the American people at higher risk of sickness and death, but infectious disease research also has a broader impact. Cancer research has been propelled by scientific understanding gained from research into retroviral treatments for HIV and mRNA vaccines for COVID-19. A pause in any area of medical research will hurt all areas of medical research.
The United States has also left the World Health Organization. For such a rare disease like EHE, international cooperation is paramount to building a sample size of patients large enough to study. The WHO is built for international cooperation, and leaving it may mean that cancer research and understanding will slow.
I am anxious about the state of our country, and I am angry at those who are unwilling to oppose the actions our government is taking. I am irate that my mostly conservative community back home in West Michigan overwhelmingly supports the Republican party when I know personally that they are extremely compassionate and supportive of those who are sick.
I am mad that my Republican representative in the House won’t stand up for me. I am also baffled that House Republicans are willing to pass Trump’s budget resolution that would require cuts to Medicare, Medicaid and Social Security, which are programs I know politicians and citizens on both sides of the aisle rely on and support.
The Democratic minority in the House and Senate also seem to be willing to let this happen. While it may look good to hold signs during speeches, it is not an effective opposition. They are either unwilling or unable to mount a unified response.
I hope people hear my story and think of those they love. This administration’s actions will hurt people. I hope our representatives stand up against this president and support the American people. Above all, I hope people begin to see that no amount of money is worth sacrificing lives.