Fighting for Access to Treatment for Dual Diagnoses
William Hatchett II knows that money can’t buy happiness.
But he has learned that it can buy access: to better medications, better therapies, and doctors willing to treat his multiple conditions. William fights that disparity in care every day in his own life and through his volunteer work.
William, 45, was born and raised in Detroit, but reconnected with his family’s Arkansas roots when he started college at the University of Arkansas at Pine Bluff. An athlete in high school, William began experiencing back pain when he was 15 that intensified as he got older.
He married, started a family—his daughter Alynn is now 22, son William III is 15—and began a career in the transportation industry. But his back pain worsened, and William was fired after 15 years because he could no longer work a regular schedule.
Without health insurance, William depended on free clinics for treatment of his chronic pain. At 30, he had been diagnosed with Crohn’s disease, and then with rheumatoid arthritis and ulcerative colitis. Crohn’s disease and ulcerative colitis are inflammatory bowel diseases that affect the digestive system, causing pain and a variety of other symptoms; in rheumatoid arthritis, the immune system attacks the tissue and joints, causing inflammation and pain throughout the body. William’s treatments were a patchwork of steroids and other low-cost options.
A ROLLER COASTER OF TREATMENTS AND INSURANCE HURDLES
When Congress passed the Affordable Care Act, William’s situation improved drastically. With his new health insurance, he could now begin receiving infusions of a biologic drug that could more effectively treat his diseases.
William spent four years getting monthly infusions, and was distraught when he showed up for treatment one day only to find that his insurance no longer approved the infusions.
His health took a nosedive, and William relapsed.
The Crohn’s sent him to the bathroom “30 to 40 times a day.” He shares, “I was probably 110 pounds, and I am 6 feet tall. My son would help me get to the bathroom and back to bed, and that would be the extent of my day.”
Eventually, he learned there had been a clerical error and he qualified for the infusions after all. But after eight months off, he couldn’t restart on his prior biologic protocol. “You have to be on [the biologic] for life, so it was no longer effective,” he explains.
His provider suggested a treatment that would require William to give himself daily injections, but he refused: “There was no way I was going to be stabbing myself in the legs every day. I told them never mind, I was just going to figure it out.”
William’s decision alarmed his team of medical providers—the gastroenterologists, nutritionists, therapists, neurologists, and other professionals William finally had access to once he had insurance. Somehow, they managed to get him qualified for a different biologic infusion treatment, which William said is the gold standard for his conditions.
“It’s access. It’s all about access,” William says. “When I went for my first infusion, I was next to an older white guy who was also getting [the new biologic]. I asked him when he was diagnosed with Crohn’s and he said, ‘Last month.’ Meanwhile, I had been waiting four years.”
PHYSICAL ACTIVITY PROVIDES NEW MOTIVATION
William was finally getting the treatment he needed, but he needed to do more. As a former athlete, he knew that if he could get to a proper weight and improve his muscle tone, he would feel better. “The stronger my midsection is, the less pain I feel from my Crohn’s disease,” he says. “Exercise also gave me an appetite, so I no longer had to force myself to eat.” With help from his nutritionist, William’s weight increased from 110 pounds to 145.
After getting the OK from his medical team, William went from physical therapy and water aerobics to walking and strength training at a local gym—then fitness competitions. “I wanted my son to see me go from being in bed all day to competing with people who don’t have any disabilities,” William recalls. “He knows what I went through.”
FINDING—AND OFFERING—VITAL SUPPORT
William’s declining health left its mark on the rest of his family. He and his wife divorced after his Crohn’s diagnosis, and relationships with extended family members were strained. “I didn’t have a whole lot of support in the beginning,” he says. “When you can’t work and you have a family, you are going to need money, and they may turn away. You can’t linger on that. You have to move on and still love these people, but your main support doesn’t come from them. They may not understand your disease. I mean, when you are 110 pounds and on a cane, you can tell that they are scared.”
William turned to support groups to meet others living with Crohn’s and other diseases. He reached out to the Crohn’s & Colitis Foundation. “I was able to talk to people who are dually diagnosed about their treatment,” he says. “That was the first support group I found, and they were really vital in steering me in the right direction.”
He joined the men’s group at his church and got involved with Color of Crohn’s & Chronic Illness (COCCI), whose mission is to advocate for and support Black, Indigenous, and people of color who live with digestive diseases and associated chronic illnesses. He also found a therapist. “[Crohn’s] messes with you mentally and emotionally,” William shares. “You may not know how to deal with this, and therapy helps you get on track.”
William compares notes with group members who are on the same medication, or have issues with their health insurance. He helps assuage the fear of those who are newly diagnosed. He cheers on their successes as they cheer on his own.
In March 2022, preparing for the Little Rock Shamrock Shuffle 5K race, William knew he might need to walk some of it, “but I will try to run at least half,” he promised himself. He ended up finishing first in his age group. Warmer weather means short hikes with his son and taking out his kayak again. “It’s challenging, but I love it,” he says. “It keeps you mentally strong, because you need to stay focused to stay stable.”
He and his son like to tinker with his old BMW and play with his dogs, and most recently, William became a proud grandfather when his daughter had a baby.
“Just because you have an illness, the world does not stop,” William says. “It just gets tougher, but you have to learn how to navigate it. My biggest fear concerning my health is being denied infusion or coverage, because it happened before to me. That’s another reason I feel I need to be in shape: to deal with the pain easier when it comes.”
—Calli Barker Schmidt
This is a portion of a poem William wrote while experiencing a relapse in 2019.
No pain no gain, isn’t that what they say,
If they only knew how pain changes lives, it might
have been phrased a different way.
Pain is subjective, but I’ll share with you my foray.
What’s your pain level today, they always say,
As I arrive for another, scheduled doctor
I respond, I’m ok
Cause no 1-10 can measure the pain I endure
today, or any day.
10 years of pain, 10 years of strain
On everything, because that’s what it touches,
Pain is like a parasite, when you’re in its clutches,
It takes energy, drive and determination from its host,
But the mind is what’s affected most.
Pain is with me, and here to stay,
So if you ask me how I feel, I’ll say ok and smile,
But actually, I been in pain for a while.