I’m 39 years old and all my friends are dying.
The medical system is failing us. Poor and wealthy, those with and without insurance. We suffer at the fate of a system that optimizes for revenue instead of alleviating human suffering. Regulatory bodies that care more about protecting pharmaceutical company profits than human lives.
It takes around 10 years for a drug to get approved by the FDA and only 48 drugs were approved in 2019. This isn’t even 48 drugs for unique illnesses that have never had a drug. In fact, a recent study showed that around 65% of FDA submissions are just reformulations or improvements of existing drugs. I mean, there are at least 10 different approved heart-burn drugs that aren’t antacids.
Regulation is killing us, literally. As we don’t get the drugs we need to help us fast enough.
Regulation is killing us, literally. As we don’t get the drugs we need to help us fast enough.
Not only does regulation slow drug development but it allows for high drug prices and little competition. US drug prices are almost four times higher than economically similar countries throughout the world. Pharmaceutical companies make billions, averaging 15%-20% profits when the average for non-pharmaceutical companies is 4%-9%. The government allows this despite over 80% of Americans believing that prescription drug prices should be lower!
I’m not writing to be unbiased because I am not unbiased. It’s no secret that I think that individuals should become more independent of the medical system. I have experimented medically on myself numerous times including a fecal transplant and a few gene therapy experiments. I buy my contacts on the internet from Canada without a prescription. I order blood tests online and draw my own blood. My advocacy for medical freedom, body autonomy and genetic engineering accessibility has brought about a lot of heat. The FDA, the California Medical Board & California Department of Consumer Affairs have investigated me. The state of California has passed a law that specifically targets my company. Why is the system fighting so hard against me? Someone who has never sold a drug, except maybe weed to a friend in high school.
The system is scared and afraid of people functioning on their own. You don’t know enough they say. You’re going to hurt yourself and others. They make trying to help people illegal even when there are no approved treatments.
As I become more well known the number of emails and messages I receive from people suffering from disease and looking for help is becoming insurmountable. I rarely respond anymore. I can’t because I usually end up becoming friends with people and I can’t keep watching my friends die. There was a time in the beginning when I did respond. That’s how I met L and D and how we became friends.
D was diagnosed with Non Small Cell Lung Cancer (NSCLC). She was in her 30s and a never smoker. I quit smoking after I started talking to them. I couldn’t handle the guilt. There are no approved treatments that could cure D’s NSCLC and so she decided to try something radical, something illegal, she wanted to try individualized peptide immunotherapy. It was either that or wait to die.
My PhD in Molecular Biophysics taught me how easy it is to order peptides from companies on the internet. You can have them shipped to your home. If companies won’t ship to you then you create a fake business name, website, sign your emails “Ph.D.” and get a PO Box. You can even get an Employer Identification Number from the IRS without any requirements. Having drugs made for you is within the realm of possibility for anyone even if you have no scientific knowledge. We thought people should know this and so together with L, other PhD scientists, medical doctors and people with cancer we developed a DIY guide on how to order peptide immunotherapies. AS, a friend and medical doctor who helped us with this guide passed away in March 2020.
S was on our cancer email list and we became friends. S also had NSCLC and eventually acquired some illegal immunotherapy peptides. The chances these peptides could help were small but that was better than the nothing that was available. That was better than waiting to die. In Summer 2018, she told me she was going to be in the Bay Area visiting family and she wanted to meet up.
I almost backed out at the last minute because l was scared. But what excuse do you give to a dying person? How do you look them in the eye and refuse them anything? I don’t understand how a government can tell someone dying that they can’t try unapproved treatments because, get this, they may die. Cowards.
The thing I remember most about spending time with S was her smile. The purist smile I have ever seen. S never injected any illegal peptides before she passed away. I don’t know why she wanted to meet. Maybe she just wanted to say goodbye. That’s her hands in this video she created shortly before her death. She passed away in January 2019.
I never met M but he loved to workout and would even do so in his hospital bed. I think it helped him to have something to focus on other than the cancer. We were bros. I remember when he told me he didn’t have long. I told him how much of an inspiration he was to me and that’s the last conversation we had. M passed in December 2018.
The number of friends with cancer I have watched pass away is more than anyone should need to endure.
It’s not just cancer either. K, contacted me because she had muscular dystrophy and could barely move, she couldn’t gain any weight, was frail and close to death. There are human tested gene therapies that have shown promise in Becker muscular dystrophy. For Duchenne muscular dystrophy something as simple as gentamicin sulfate has increased dystrophin levels by as much as 15% when tested in humans. A DIY infusion regimen similar to the study would cost an individual around $600 for the compound. I couldn’t help and she passed in June 2018.
If you have the knowledge, million dollar gene therapies like Glybera can be recreated for under $50k. The patents and regulatory filings provide all the details even down to the DNA sequences used, the dosages needed and administration protocols.
Most any drug can be made by a company in Asia. Just make a post on Alibaba and you will get a quote in less than a week. If you want premade, prepackaged drugs there are many websites that sell from the same manufacturers that are used by US pharmaceutical companies, same packaging and all. You can find these sites pretty easily after searching Reddit for a few minutes.
I hate telling people that the biggest thing between them and a self-administered treatment option is just their own lack of knowledge. That the government makes it so that those like me with knowledge can’t help them order and administer drugs they want to try.
Would you risk going to jail for trying to prevent someone’s death? I feel guilty about that question every day.
According to the government it is ok for an approved medical treatment to kill me. Ok for a self-treatment to kill me. Ok for me to suffer and die without any treatment. If however someone helps me with a treatment, even if the drug has been tested in humans, it is against the law.
People don’t contact me because they are looking for an approved drug. Every single one of them would be willing to try a risky treatment if it meant even a small chance of alleviating their suffering. I have thousands of emails and messages. The husband who has stage 4 cancer, his wife telling me she and her kids can’t live without him. The couple who are drug addicts and would do anything for their daughter to not suffer the same fate. The family that has two kids with muscular dystrophy. The younger brother watching the older deteriorate knowing it won’t be long till he suffers the same fate. Neither child will live past 25.
D passed away in January 2020 and many others die each day without any hope.
See, it’s not money or knowledge that keeps people suffering, it is greedy corporations and the regulatory system that supports them. The system is so set on avoiding blame for someone getting hurt trying something risky that we would rather just let people suffer and die with no chance.
