How Dare They
When Conspiracy Theories Meet Grief
Yesterday, a relative told me to my face there is a cure for cancer. Very matter of factly. “There is a cure and they won’t give it to us so that big pharma can make money off of us.” They then not only double downed, but tripled it. To me. A widow whose husband was given a terminal cancer diagnosis at 47. An advocate who has worked in oncology communications for more than nine years.
All I can ask myself is, “How dare they?”
Anger is a natural part of the grief cycle. But this anger is like anything I have ever experienced. With it is deep, all consuming hurt. Every nerve ending in my body is raw and exposed, pain jumping in random intervals across axons firing electrical impulses that I cannot control.
How in the hell did I get here? On today, No King’s Day where we protest the tyrannical behavior US government and the appointees who are quite literally killing people with their policy changes. Where the conspiracy theories came too roost the day before and I was slapped in the face repeatedly that my husband could have lived had the government not been hiding “the cure.”
Medical progress is at the greatest risk it has ever been in the US. Between the loss of researchers and clinicians due to visa issues and the cut to the National Institutes of Health by a crushing 37%. Every significant breakthrough we have had in cancer research for the past 50 years has been linked to research at the NCI.
Progress in new cancer treatments will be stalled. Earlier detection, when cancer is in its most treatable stages, will have fewer options.
The scope of the damage is staggering.
National Institutes of Health (NIH) grant terminations have pulled almost $2 billion in funding away from U.S. medical schools and hospitals, including $314.5 million in funding intended to train biomedical and health researchers, according to an analysis from the Association of American Medical Colleges (AAMC).
The halted funding undercuts medical schools and academic hospitals’ financial sustainability, immediately ended at least 160 active clinical trials for patients being treated for conditions like HIV/AIDS or cancer and threatens “the ability of academic medicine to attract and retain the best and brightest scientists,” the association warned in a Wednesday data brief.12
My grandmother is 92. She remembers lining up to get life changing vaccines with her family. It was a source of pride — these advancements in science. And this woman remembers watching her infant sister, whom she only refers to as Baby Elizabeth, die from what now is preventable thanks to vaccines. This Scots Irish Appalachian woman who grew up on dirt floors, with no electricity or running water, and started picking cotton at the age of five in order to help her family survive. The same woman who has skin cancers cut out of her body on what seems like a monthly basis, or using chemotherapy creams to treat the random basal cell carcinomas she can’t escape. The woman whose skin I have inherited.
The woman who voted a straight ticket for the first time in her life when Hillary Clinton ran for president. Who still votes that straight ticket. Who believes in science. Who believes in me. Who is the only person I can talk to when it comes down to a lot of things because she too is a widow of a man she loved and adored.
My mother, a nurse. Who has watched progress from the patient bedside for decades and who raised me to think critically.
My son checks on me frequently. He’s worried about my thousand yard stare. I finally confessed that this is how I am every day. I am just really good at masking and am choosing to let the world see my pain.
Science is beautiful. People who are practitioners of science — medical professionals, researchers, chemists, physicists, etc., spend their lives studying and giving back. Many often spend hours every day hunched over microscopes and with test tubes trying to make this world a better place. Developing treatments better than we had before.
In my day job, one on the phrases I have always used is, “Patients who participate in clinical trials are helping to create the treatments of the future.” Those patients are not only seeking healing for their disease, they too are practitioners of science — whether it is an attempt to extend their lives or to help others. When I started the five year survival rate for pancreatic cancer was 5%. It is now 13%. It doesn’t seem like a lot of progress, but there has been so much and continues to be more, or will be if the US does not stop cutting its nose off to spite itself.
It’s like reliving Tony’s death all over again. Knowing we gave it everything we had and trusted the scientists and researchers and clinicians who gave us the best thing we could have ever had — time. That time was the best gift of my life. Nothing will ever be more precious.
https://www.fiercehealthcare.com/providers/nih-grant-cuts-have-pulled-2b-medical-schools-academic-hospitals-aamc
https://www.aamc.org/media/83996/download