The Human Cost of RFK Jr’s Vaccine Cuts

I lost my Mom to pancreatic cancer when she was 48 years old. She lost her mother to the disease as well. Families like mine are the human cost of cuts to science and mRNA vaccine research.

Last week RFK Jr announced he was cutting half a billion dollars in mRNA vaccine research. This technology is life saving, but because of anti-vaxx fear mongering and disinformation campaigns around Covid, people fear it.

As a result, many are celebrating the cancelled research because they don’t understand how these vaccines actually work, nor do they understand the human cost to cutting this funding.

I’m the human cost. Families like mine are the human cost.

I lost my Mom to pancreatic cancer when I was 19. She was only 48.

My grandmother also died from it at 53.

I remember the day she was diagnosed like it was yesterday. I was fortunate to have a rather privileged upbringing. We were by all accounts a relatively happy and healthy family.

Mom hadn’t been feeling well for a few months, but it was fairly non-specific. She had complained about back pain, itching and some trouble breathing. Her doctor had given her a puffer and brushed the rest off as ‘stress.’

One morning she woke up and she was yellow. In that moment we knew something more serious was going on. She had urgent testing done which revealed the need for an ERCP. We were told there was likely a blockage in her bile duct, but once it was removed she ‘should’ be ‘ok.’

I was scared but still believed everything would be fine. Mom was young and otherwise healthy. She was getting prompt medical care. They just needed to find the blockage and she would be back home with us in no time. The thought that it could be cancer never even crossed my mind.

I would give anything to go back to those days. To the time before I was scared that every diagnosis would be the ‘big one’. To a time where I genuinely believed everything would work out for the best. To a time when I thought my family would be together forever.

The blockage turned out to be a tumour in her pancreas, which we hoped would be benign. When it came back malignant we received the crushing statistics that every pancreatic cancer patient has to hear. The five year survival rate is virtually non-existent. Most patients don’t even make it a year.

Since she was so young, the doctors decided to try aggressive treatment. They attempted to shrink the tumour with chemo and radiation so that a whipple could be performed.

The ‘whipple’ is major and invasive surgery. It’s virtually the only chance at survival when dealing with pancreatic cancer, but most patients are too far advanced to qualify.

I went with my Dad to the hospital the day of Mom’s surgery. We were told it could be eight hours or longer, but that if they came out sooner it meant the cancer was too advanced to continue.

Sitting in that waiting room was one of the scariest experiences of my young life. Sure enough, about three to four hours in the surgeon came out to give us the bad news. They couldn’t remove the tumour. Mom was terminal.

They did what they could to alleviate the blockage in her bile duct so that she would be more comfortable and closed her up. Her only real chance at survival was gone, and we had to find a way to break the news to her.

Looking back at that time in my life is painful. I was in a state of utter disbelief that I was going to lose my Mom. Intellectually I knew she was going to die, but emotionally I couldn’t fathom a world without her. It just didn’t make sense, and at 18 I wasn’t prepared to deal with it.

Once she came home from the hospital she sat me down to have a talk about what her diagnosis meant. I remember trying to be strong for her. Not wanting her to see how scared and sad I was because I didn’t want to make it harder for her to accept what was happening.

The thing is, she didn’t need me to be strong. Because she had been through this before. She lost her Dad to cancer when she was only 21, and her Mom to pancreatic cancer a few years later. She was intimately familiar with the pain of losing a parent.

She sat next to me on my bed and told me that she knew exactly what I was feeling because it was the same way she felt when her parents were sick. She knew how scared and angry I was because she went through the same emotions. She understood how unfair it was that she was being taken from me so young.

She didn’t want me to go through what she went through, but since she was powerless to stop it the best she could do was prepare me. So that’s what she did.

She told me she hated knowing that her girls were going to grow up without a mom. She wasn’t afraid of dying, but she was afraid of leaving us behind. Afraid that we weren’t prepared enough to face the world without her.

She was heartbroken that she would miss major milestones like graduations, marriages and grandchildren.

She wanted more time.

It broke my heart to hear her talk about all the milestones in her own life that her parents weren’t there for. I could hear the pain in her voice as she recounted the times she wished they had been there. As she told me how much they would have loved seeing me grow up.

All I wanted to do was provide her the comfort she was trying to provide me, so I offered to marry my high school boyfriend.

Yes I know it was silly, but grief makes you do silly things. In that moment all I could do was think of ways to help make sure she didn’t miss out on major events, and since I was 18 I figured I could technically get married.

Thankfully my Mom had better control over her grief and immediately nixed that idea. Instead she told me that more than anything she wanted me to be happy. She didn’t want me to ever feel pressured by someone else’s expectations or timetables. She wanted me to do what I wanted with my life.

Then she imparted one of the most poignant things anyone has ever said to me. She said it was her job to give me strong roots so that I could develop wings, and now it was my turn to fly.

She asked me to take care of my Dad and younger sister. She said she was sorry that so much was falling on my shoulders but that she had made me strong, compassionate and loving and knew I would get through it.

We seized the heck out of the last few months of her life. Her medical team moved mountains to keep her as comfortable as possible so that she could have an enjoyable final summer by our family pool which she loved so much.

We took lots of photos, shared stories and I tried to ask her all the questions I could think of. Stuff I would want to know in the future when she wouldn’t be around. Things I would want to be able to tell my younger sister or the next generation of our family.

I also purchased memory books for Mom to fill out, and I strongly encourage anyone facing terminal illness to consider doing this if they have the energy.

They’re books designed to help a person document their entire lives. You can add photos and memories, there are questions to answer, prompts to make you consider what kind of a legacy you want to leave behind and pages to write your own letters to your loved ones.

I cherish those books more than anything else I own. I’ve looked back at them hundreds of times during my life. They’ve answered tough questions, provided comfort in darkness, and brought me joy and laughter.

She also hand wrote letters to me, my sister and my Dad for us to open once she passed. The fact that she knew the pain of losing a parent meant that her letters touched on all the things I would need to know as I grew up.

They allowed me to hear her voice in my head when I was lonely. Get her encouragement when I was ready to give up. Her guidance when I was floundering. They gave me the greatest gift of all, they allowed me to keep her memory alive longer than I ever imagined possible.

Why am I telling you all of this? What does it have to do with RFK Jr and his recent funding cuts?

I’m telling you this because my Mom died nine months after diagnosis. She was only 48 years old.

She left me and my 14 year old sister behind.

We are the human cost of RFK Jr’s cruel cuts to vaccine and science research.

Photo by Sandy Millar on Unsplash

Image Description: A photo of a grave that says ‘In Loving Memory’ with flowers on top of it.

Pancreatic cancer is quick and lethal. It’s almost always caught too late, and it’s rare for people to live more than a year from diagnosis.

Other than the whipple, which most don’t qualify for, there’s vanishingly few treatments.

There is an mRNA vaccine for pancreatic cancer in development. It’s been a beacon of hope for my family for years. And it’s in jeopardy because of these funding cuts.

The promise of a vaccine was hope for my family. For my sister and I who live with the fear of being diagnosed with this cancer ourselves. For all the families who’ve lost loved ones to this disease.

We are the human cost. The lives that could be saved and may not be because of funding cuts that don’t follow the science. That don’t prioritize medical advancements which save lives.

There’s no words for the rage I feel when I think about RFK Jr’s decision to cut funding for this life saving research.

His anti-vaxx grift has already killed and disabled many people. Measles is back and the US had its first pediatric measles death in over a decade. Covid is still with us and still killing and disabling people.

Now he’s effectively siding with cancer. He’s pushing harmful ‘wellness’ rhetoric at the expense of real research and scientific advancement.

He’s fired the entire CDC vaccine advisory committee. He’s restricted who can access the Covid vaccines. He’s sowed public distrust in vaccines that have all but eradicated many diseases.

The harm he is doing could take decades to undo, and it will be felt the world over. In this age of global travel, the decisions made by one country easily impact others.

Unvaccinated people will travel and cause public health threats in other parts of the world. RFK Jr’s anti-science rhetoric will spread beyond the US borders, causing people in other countries to forgo vaccination as well.

As for the life saving cancer research, my only hope is that other countries will pick up the slack. That private donors may step up to fund it, or that with enough public pressure RFK Jr reverses his stance.

It’s appalling that one man, who isn’t even a doctor or medical professional, should wield this much power over public health and science.

He’s unqualified. He’s malicious. He’s a grifter. And he’s going to kill people.

Please understand that these cuts come at a cost. Actual human lives lost. Hope taken away. People like myself and my sister left wondering if we will ever see a cure or effective treatment in our lifetime.

We deserve better than this. We deserve an HHS leader who actually believes in science. Who’s more interested in saving lives than lining his pockets.

We deserve leaders who promote life saving interventions, robust public health and cutting edge research.

We must all keep speaking out until we get the leadership we deserve. Until we get funding restored and rebuild faith in vaccines.

The longer he’s allowed to continue his anti-science grift, the harder it will be to undo the damage.

So get loud and stay loud. Get your boosters while you still can. Support non profits and organizations working to continue the important scientific research and public initiatives needed to save lives.

If you want to support pancreatic cancer research and awareness directly, consider donating to the Pancreatic Cancer Action Network.

Another way you can support people with terminal illness is by donating to your local hospital or palliative care programs. My Mom received the most incredible palliative care, and it helped my entire family process what was happening to her. These organizations (and the people who work within them) are vitally important to those suffering incurable diseases.

As always, I encourage you to tell your own stories. If you’ve lost a loved one or if you’ve encountered road blocks accessing needed vaccines or treatments, please share in the comments.

Together we can help the general public understand that we are not just numbers on a spreadsheet. We aren’t hypotheticals. These drastic cuts impact real people, and we need others to support us in the fight.