Jesse John Francis Clark is a hemophiliac. Unfortunately for Clark, and the more than 20,000 hemophiliacs in the United States alone, there is no cure for the blood disorder. While there isn’t a cure, there is medication that hemophiliacs must take consistently to prevent bleeding to death.
As a serial entrepreneur, Clark founded Fixx Pharmaceuticals to find a cure for hemophilia. Using gene editing, Fixx Pharmaceuticals are working to end the reliance individuals have on the medications that “Big Pharma” sell for billions of dollars.
Clark’s work as founder of Fixx Pharmaceutical is on the verge of changing the world and gene editing could alter medicine. In the end, it could change the way hemophiliacs live their lives.
Jesse, according to the Fixx Pharmaceuticals website, the company was founded with the goal of developing and commercializing a treatment that will cure hemophilia and other bleeding disorders through gene editing. Firstly, what drew you to work in the field of gene editing?
Well, I was diagnosed with severe hemophilia before my first birthday. A lot of people don’t know what hemophilia is so I might as well go into a little bit of that first before I get into how I got into gene editing. Hemophilia is a bleeding disorder in which the blood does not clot properly. Blood contains proteins called clotting factors that help our body stop bleeding. I was born with a factor VIII deficiency so I need to inject factor VIII into my body every week to help my blood clot since my body cannot do that on its own. Hemophilia is an inherited disorder due to a defective X chromosome which I inherited from my mom. Most people think that a hemophiliac can die from a paper cut. That is not true. What a hemophiliac needs to worry about are spontaneous joint bleeds. For example, I could go to sleep and wake up with bleeding in my elbow. This is where my elbow will be warm to the touch, swollen with loss of range of motion and, most importantly, extremely painful. Every hemophiliac has a target area. For me, it’s my elbows so that’s where I get the majority of bleeds. I know for other hemophiliacs, their target joints may be their knees. So, in order to prevent bleeds we need to infuse every week. After 37 years of getting poked with a butterfly needle every week, I decided to do some research on how I could make my body produce factor VIII and, right now, gene editing is the only way to cure hemophilia.
As the founder of Fixx Pharmaceuticals, what was the process of creating the company and launching the goal of curing hemophilia and other bleeding disorders?
Well, in order to start a pharmaceutical company, I wanted to know more about gene editing so I enrolled in a gene editing course through Harvard University. I wanted to know as much as I could and I am still learning. There are people on this planet who have devoted their entire life’s work to gene editing so I have a lot of catching up to do. I am just the founder who is in pursuit of curing hemophilia not just for myself but for everyone who suffers from this disorder. It’s the scientists who are actively doing clinical research who need to take the credit.
If we can figure out how to safely cure hemophilia, it will be a game changer in medicine. Before I started Fixx Pharmaceuticals, I needed to do a lot of research on the pharmaceutical industry. I didn’t have any connections. I just had a little bit of capital and a passion to cure hemophilia. I knew if I tried to contact CEOs and other executives in this industry, I probably wouldn’t have received a response from them. There was only one person I knew who would have the time to respond to me so I wrote a letter to this person. I was amazed to find that I received a letter back. He essentially told me to raise as much capital as I can and that this is a very competitive business.
The first thing that I did to get this started was figure out a name to call this pharmaceutical company. So, I decided on calling it Fixx Pharmaceuticals. I used the word Fixx because we are essentially trying to fix a defective gene. You’ll see that I used an additional ‘X’ in the word Fixx and that’s because a hemophiliac inherits a defective X chromosome. If you take a look at our logo, I had our designer make the ‘X’ have a slight defect. After I decided on the name and had a logo and website created, I filed paperwork in Delaware to incorporate the business and issued several press releases to get the word out in the community that we exist. The response has been positive. I have had a lot of people reach out online as to how they can get involved. We have a corporate office in Las Vegas and are looking for a space to conduct active research. I am currently hiring an executive team so that takes up a lot of my time. I want to put together the best possible team that I can so we can make this work.
Blood disorders are more common than many people may realize. Although the numbers may not seem high, hemophilia affects many individuals and their families. Simple cuts are not the biggest worry that hemophiliacs face. The issues that sufferers face are far more complex and deadly.
How prevalent is hemophilia in the world today? What kind of problems do hemophiliacs and other individuals that suffer from blood disorders endure each day?
Well, there are 20,000 people in the United States with a bleeding disorder and there are roughly 400,000 around the world. The problems that hemophiliacs face are joint bleeds. When a hemophiliac has joint bleeding, it causes joint damage. So, the more bleeds a hemophiliac gets, the more damage the joint receives. In order to prevent bleeds, we need to infuse. When I was younger, I would only infuse when I got a bleed. I figured I would only poke myself with a needle when needed. However, when you do that, you are causing damage to your joints. So, after years of joint bleeds, I have severe joint damage in my right elbow. I have lost some range of motion in my right arm. My elbow is practically bone on bone. When I move it, you can hear it crackling and with this damage comes joint pain and inflammation. It’s not fun living in pain every day. I will probably need an elbow replacement someday soon.
Fixx Pharmaceuticals uses CRISPR gene editing. Can you tell us what CRISPR is and why it is your preferred method for gene editing?
Sure, CRISPR stands for “clusters of regularly interspaced short palindromic repeats.” I know that is a mouthful, so it is referred to as CRISPR for short. This is a process where we can cut out a defective gene using a protein called Cas9 and then we can insert a healthy gene. I was born with a defective factor VIII gene so CRISPR would be used to cut out my defective factor VIII gene and a new healthy gene would be inserted so my body can produce factor VIII on its own. I as well as many other hemophiliacs will never have to infuse this protein ever again.
According to Clark, hemophilia cures have not been developed due to “Big Pharma.”. Pharmaceutical companies make a lot of money from sufferers who need blood clotting medications. Billions of dollars in America alone is being made each year off of hemophiliacs and they don’t want it to change.
Jesse, hemophilia has been around for centuries as a blood disorder. We are now in 2020. How has a cure for hemophilia not been found? How serious is the problem?
A cure has not been found because hemophilia has been making pharmaceutical companies serious money. If a cure is found, then most of these pharma companies will go out of business because they won’t have any customers. It costs $74,000 a month for my medication. There are roughly 20,000 other hemophiliacs in the United States. If you do the math, the pharmaceutical companies are making billions off of our inherited disorder. It’s great for them, but I know I don’t want to be a slave to a factor product anymore. I can’t even go on a vacation without bringing factor medication, butterfly needles, syringes, tourniquet, band aids, etc. I practically need another suitcase just for all of that stuff.
In September 2020, you weighed in on the issue of gene editing in human embryos. You stated all attention should be focused on helping those already born with defective genes. What led you to this stance?
I think we need to use gene editing for curing diseases for people who are already alive and suffering before we start gene editing in human embryos. There are ethical reasons why we need to wait on gene editing in human embryos because any modifications can be inherited by future generations.
How difficult is it to break into the pharmaceuticals field as a newcomer to the industry?
It was very difficult. I had no connections or experience in the pharmaceutical industry. I am just a patient who is sick of living with an inherited bleeding disorder. I’m looking for a cure. I’m just passionate and not afraid to get involved in something that I have no experience in. My advice is to just start. Things will work out, but you will never get anywhere if you don’t start.
Clark will make his writing debut in December 2020. His debut book is titled Scam Artist. Clark decided to write the book to set the story straight over a terrible incident that occurred to him when a rival business attacked his work prior to him starting Fixx Pharmaceuticals.
Jesse, you recently announced your first-ever book will debut in December. It is titled Scam Artist. What is the book about and how was the writing process for you?
Yes, unfortunately, I was involved in a smear campaign in 2012 when I operated a wedding videography business. It quickly became the largest wedding videography company in New England shooting up to seven weddings a day. However, I soon found out that I was undercapitalized and, in turn, understaffed which led to a delay in getting my clients’ orders out the door. In the fall of 2012, one of my clients contacted a local TV news station about the delay. To make the story more salacious, several other TV stations got involved to run a concurrent story calling me a “Scam Artist.” It was fake news and it’s not right that the media can do this to people to gain viewership. The negative media attention had seriously damaged my reputation. I lost relationships with members of my family over this. I’m writing this book to get my story out. I also go into my struggles living with hemophilia. It really has been sort of a therapy for me.
What other types of projects are you currently working on outside of Fixx Pharmaceuticals?
I am always working on something. I’m currently developing an app that will be used for a mobile urgent care company. Patients will be able to open an app, tap a button and a doctor and a nurse will come to your home to treat any non-life-threatening illness or injury. If you need a prescription, it will be delivered to you. This medical startup will be operational in early 2021.
The world finds itself in the COVID-19 pandemic. How has it affected your work as an entrepreneur and the lives of individuals suffering from hemophilia?
The virus has not had any effect on me. I am a serial entrepreneur so a few of my businesses have seen a decline in sales but, other than that, the virus has no effect on individuals suffering from hemophilia. I was still able to receive my medication during the shutdown.
Jesse, what is a day in your life like?
A day in my life is crazy. It’s go-go-go all the time. I wake up every day at 6 AM, sometimes earlier if I can’t sleep. The first thing I do is to check my messages and I immediately respond to anything pressing or important. I then catch up on any news that developed overnight and see how the stock market is doing, I then go to the gym, do a 5K on the treadmill and then hop in the shower. I do not eat breakfast during the week. I only eat breakfast on the weekends. Depending on the day, my chauffeur arrives between 8:00 AM and 8:30 AM.
I hired a chauffeur a couple of years ago. I like to get work done on my iPad on the way to the office. If I had to drive, I would have to focus on the road and that’s time away from work. Being in the back of a car and having a driver allows me to focus on work before I get in the office. I like to be dialed in at all times. I get to the office no later than 8:45 in the morning. I will have several meetings with staff during the day. I do not take a lunch break. I have drinks and snacks in the office that I’ll consume but taking a lunch break is wasting time.
My chauffeur arrives at 3:30 PM to take me back home. If I am having a busy day, I will stay at the office later, but I usually like to work in the office until 3:30. After I get home, I might change clothes and get ready to go out to dinner. I usually eat out five days a week. My favorite restaurant is the Capital Grille. I’m a big steak eater. After dinner I might do a little shopping before heading back home where I will do some more work on the computer and answer any emails that I received. I will take one more shower before bed and it usually lights out by 10 PM. I need to get a minimum of seven hours of sleep or I don’t function like I need to in order to get everything done during the day.
What is something most people don’t know about you?
For the last seven years, I have done extensive research on extraterrestrial life. I can tell you for certain that life exists outside of earth. There is so much evidence and testimony from people that it is impossible to hide the fact that there is extraterrestrial life. The United States government has recently admitted that ETs exist. Bob Lazar was a government insider who broke his silence and blew the whistle on Area 51. Bob drew an image of a craft that he worked on at Area 51 and he signed it. I have that drawing hanging in my office. So, if I am not working, I’m probably researching leaked government documents on extraterrestrial life. I bet they know how to cure hemophilia.
Can you share two of your favorite quotes with us?
“Life can be meaningful enough to justify its suffering.” – Jordan Peterson
“When something is important enough, you do it even if the odds are not in your favor.” – Elon Musk
If you had the power to change just one thing in the world what would it be?
If I had the power to change one thing in the world it would be to make all humans extremely intelligent.
Is there anything else you would like to add?
Sure, there is a lot I would like to add but most of what I need to say will be in my book that will be released in December on Amazon.
Fixx Pharmaceuticals is working to change the lives of people suffering from hemophilia. By finding a cure for hemophilia, Clark isn’t just helping people live better lives, but it will prevent them from spending thousands of dollars each month to buy medication, making “Big Pharma” wealthier.
As a serial entrepreneur, Clark has a drive to develop the best businesses possible. His latest work in the pharmaceutical arena is exciting and potentially life changing. The company’s work in gene editing could eliminate hemophilia and other inherited bleeding disorders. Clark is on the verge of creating a game changing treatment for the world.
For more information on Jesse John Francis Clark and Fixx Pharmaceuticals, visit www.fixxpharma.com
Photography: Brien McCrea
Journalist and author. Contributor