Photo Courtesy of the Morris Family | Diego Morris ’19 claps behind as President Donald Trump signs the Right to Try bill.
By Eric Lindholm ’19
Imagine having to move from your own country, not a refugee fleeing war or as an immigrant seeking a better life, but because of a rare illness, which has an antidote that is forbidden by your own government.
Welcome to the story of Diego Morris ’19.
At first glance, Morris appears to be a normal high school senior.
If you have never spoken to him or heard his life experiences, you would be surprised by the amount of adversity and pain Morris has experienced.
When Morris was just 11-years-old at the beginning of the 5th grade, he was diagnosed with osteosarcoma.
“I had to go through cancer treatment because it’s a rare bone tumor that was in my left knee,” Morris said. His treatment was extremely extensive.
“With this tumor, I needed to have intensive chemo and then eventually limb salvage surgery, which is where they replace part of my knee and part of my femur with titanium,” said Morris.
The rare bone tumor dramatically changed the course of Morris’s life, but not because there wasn’t treatment.
There was a treatment, but the catch was that it was not approved for use in the United States. Morris said, “MTP is an immune therapy treatment and it’s been approved pretty much all over the world where they’re practicing first world medicine and it’s shown a lot of potential in helping people with osteosarcoma and a lot of other cancers as well, and basically the immune therapy treatment is just given on top of the chemo.”
However, the United States Food and Drug Administration (FDA) had not approved the MTP treatment process.
Due to inefficient government bureaucracy in ushering the bill though the multi-stage testing process, Morris and his family were exhausted of options.
“So after trying to literally do everything, tried to go through the FDA, tried to see if there was just any way possible to get it in the U.S., we realized that it just wasn’t going to happen,” Morris said. “Basically the entire FDA process is a lot of bureaucracy. It’s a lot of politics and not a lot of common sense,” said Morris.
However, there was one final option in the United States for hope of treatment. “You have to go through the FDA’s Compassionate Use program, and the Compassionate Use program is supposed — keyword “supposed”–it’s supposed to help you get experimental treatments if they’re not approved yet and get them legally and through the FDA,” Morris said, “so you can still have your own physician administering it, but the process just takes way too long.”
Physicians with firsthand experience with the FDA Compassionate Use program estimated wait times for treatment approvals to be nearly a year, and for Morris’s case and many others, this was far too long.
“Obviously with a terminal illness you don’t have a ton of time to just wait and the process was months long to try to get, that’s 8, 9 months to try to get this treatment and I just didn’t have that time,” Morris said.
Having exhausted his options and with not much time on his horizon, Morristook the next step in saving his life by moving with his family to London for privatized treatment of MTP, which is legal in London and the United Kingdom.
“The hospital I went to was called the Harley Street Clinic, and it’s tiny compared to the massive hospitals that we have here,” Morris said.
Further contrasting the difference to American hospitals, Morris said that “if you walked past it you might not even think it was a hospital, they’re just very small and unassuming, but it was great treatment. All the people are really nice.”
Despite the comfort of a small hospital, Morris faced an extraordinary grueling treatment process that lasted nearly a year. “I was in the hospital for a week getting chemo every day, and then I would have a week or two off, and then go back in,” Morris said.
The long periods of time Morris spent under the chemo had adverse effects on his body and put him under immense pain. “Chemo makes you insanely nauseous,” Morris said.
“It’s literally killing you, it’s killing your cells, but it’s also killing, hopefully, the cancer cells. “So you’re losing your hair, you’re losing your skin pigment, you’re getting really pale, said Morris. He also added “it’s a horrible thing to have to go through.”
Cooped up in small hospital room with daily battles against the chemo while simultaneously undergoing knee operations, Morris stayed resourceful and active.
“I would try to go on walks throughout the ward, and I was trying to do physical therapy as much as possible, after going through a few knee surgeries,” Morris said. “You don’t just want to sit there and feel sorry for yourself. At least I didn’t want to because I just didn’t think that would be good for anyone, especially me. I tried to distract myself as much as possible,” said Morris.
Diego’s positive attitude to adversity is echoed by his friend Jack Kolbe ’19.
“He seems to be perfectly suited to whatever situation is unfolding. He’ll crack a joke that changes your entire mood, but can also be a super caring friend when things call for some seriousness,” Kolbe said.
After successful treatment with Morris fortunately not suffering from long term chemo effects, he made the transition from London back to the United States to lead a new campaign: change the rules of the FDA so no one else would have to endure what he did.
In a hearing for the Right to Try bill, a bill to designed to grant patients the right to save their own life by utilizing experimental treatments in a timely manner, Morris was invited to testify in front of the Homeland Security and Governmental Affairs Committee chaired by Wisconsin Senator Ron Johnson.
An important contextual reason for the long confirmation process is that bills passed by the House and Senate must be identical before being presented to the President. “We’ve been trying to get Right to Try passed in the House and in the Senate, kind of the same version, for a few years now and then finally this last May the same version got passed,” Morris said.
Morris included that President Donald Trump was a key player in giving the bill the relevancy it needed to pass through both chambers.
“The President was really helpful with this bill in his State of Union. In last year’s State of the Union, he talked about how important Right to Try was and that was huge, and really important for the bill because his backing of it helped get it through the Senate and the House, and it made it a priority, which I don’t think it was as big of a priority in previous years.”
Kolbe additionally attests to Morris’ humble character throughout the process.
“His humility throughout the process has been amazing. Not many people can say they were a huge part of getting a bill passed and he seemed to not want any recognition for it. He’s just purely in it to help other people,” Kolbe said.
Morris and fellow survivors of rare diseases whose treatments were banned in the United States were invited to the White House, culminating in a once-in-a-lifetime photo opportunity standing behind the President while he gave his speech and signed the Right to Try Bill into law.
Morris remembers that [he] didn’t know that [he] would be asked to be up on the stage until [he] got there, so that was kind of nerve-wracking.
“It was crazy to see him actually signing a bill that’s been so important to my family and I, and for so many other Americans for years now. It was a life-changing experience,” Morris said.