After a long day at work, Henderson resident Joseph Weinberg plays with his son Beckett on a swing at Cactus Wren Park, 2900 Ivanpah Drive, exchanging smiles and laughter.
Though calm and collected on the outside, Weinberg’s body is battling its own immune system on the inside. Diagnosed with multiple sclerosis (MS) in 2009, the disease continues to cause neurological damage to the 31-year-old’s brain and spinal cord.
“You wouldn’t think I’m fighting for my life just by looking at me,” Weinberg said. “I really appreciate just being alive and having some bit of normalcy in my life, so I’m willing to take drastic measures.”
Finding little solace in previously prescribed medications, Weinberg was recommended by Dr. Le Hua at the Cleveland Clinic Lou Ruvo Center for Brain Health to receive a new treatment called Lemtrada. But because the drug was approved by the Food and Drug Administration only in November, Weinberg is uncertain whether his insurance will cover the $325,000 cost.
Self-labeled “a natural problem solver,” Weinberg launched a crowdfunding campaign Feb. 1 to help collect funding for the treatment, which he hopes to start in June.
“I was told to act like the insurance will never cover it,” Weinberg said. “But I told the clinic that if I’m able to raise all the money, and the insurance does come up with it, I will donate the money to take care of someone else’s treatment.”
MS is an autoimmune demyelinating disease of the central nervous system. The disease causes the body’s immune cells to attack the myelin sheath, or insulation, found around the nerves in the brain and spinal cord, according to Hua, who is the director of the Mellen Center for Multiple Sclerosis at the center.
“It’s a pretty prevalent disease. There are about 400,000 cases in the United States and about 2.5 million cases worldwide,” Hua said. “It tends to attack people in the prime of their lives in their 20s, 30s and 40s. It’s the most common nontraumatic disease in young people that leads to chronic disability.”
Those diagnosed experience symptoms such as loss of vision, walking difficulties, incoordination, slurred speech and sensory abnormalities. Hua said patients can experience periods of “attacks” that can last a couple of days to several months.
“We talk about MS as a multifactorial illness,” Hua said. “Patients have to have some sort of genetic priming to be susceptible. They also have to be in the right environment experiencing the right triggers. They need all three factors for it to be present.”
A Wyoming native, Weinberg moved to Phoenix with his parents during high school. After serving a religious mission in Nevada, Weinberg returned to Arizona to work in the information technology field.
In 2007, Weinberg noticed that one of his legs couldn’t keep up with the other while playing basketball. He went to a doctor, who couldn’t explain his numbness and tremors.
“I was misdiagnosed probably four times,” Weinberg said. “They thought I had pinched nerves or a bulging disc. At one point, my hands were numb, so they thought I had carpal tunnel from working on a computer.”
In November 2009, Weinberg said he went numb from the neck to his waist while walking into work.
“I went to the Barrow Neurological Institute because I knew it had to be something neurological,” he said. “After two weeks and tons of tests, they finally figured out I had MS.”
Weinberg was prescribed different medications to prevent attacks, but his condition continued to progress. In 2013, he experienced an attack that lasted nearly a year.
Out of work, Weinberg and his wife sold their house and moved into her parents’ home in Utah with their two young sons. The couple cashed out their 401(k) and lived on their savings while waiting to get approved for federal disability.
“I didn’t think I would work again. I lost cognitive functionality to where I couldn’t even talk to anyone,” Weinberg said. “I had pretty much lost it. I knew I existed, but I didn’t see how things could ever get better. My wife grieved as if I had died.”
After several months, Weinberg was prescribed a new medication that helped calm his attacks and allowed him to work again. He was hired by The Cosmopolitan of Las Vegas, which paid for his family to relocate to Henderson last year.
Shortly after moving, Weinberg experienced vision problems due to his medication, and he was “fast-tracked” to see Hua at the center in October 2014.
“There are different types of treatments that help decrease the duration of attacks and treatments that help prevent relapse in general,” Hua said. “(Weinberg) has been on several MS medications that work very well for the majority of MS patients, but unfortunately, they haven’t been able to get control of his disease as we would like.”
While most medications modulate the body’s killer T cells so that they don’t attack the myelin as frequently, Lemtrada essentially resets the entire immune system by destroying most of the cells and allowing them to repopulate at different times.
“When the immune cells come back, they are less active and less inflammatory, so the disease is quieter,” Hua said. “The novel thing about this treatment is that the patient is infused for five days and then undergoes treatment for only three days a year later. For the majority of patients, it’s the only treatment they need.”
But as the cells regenerate, Hua said the potential imbalances of cells can cause other medical conditions, including thyroid disease, blood disorders and kidney failure. Therefore, the treatment is reserved for patients who have failed alternative therapies and continue to have a highly active disease.
“Patients are monitored with monthly lab work, which needs to continue for 48 months after the last treatment,” Hua said. “So patients can go through five years of lab work even though the treatment is early on in the process.”
Although Weinberg is able to work and interact with his family again, he’s aware the sitatuion is temporary without proper treatment. He takes advantage of his stable condition by enjoying small moments with his family, such as chasing his sons around the house or reading them stories.
“I’m at a point where this treatment has the potential of working long-term, so if I survive it, I may never suffer from MS ever again,” Weinberg said. “As long as that potential exists, I’m going to continue taking the risks.”
For more information or to donate, visit gofundme.com/l854ow or tinyurl.com/clevelandcliniclouruvo.
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