Diagnosis sends patient overseas

[BobbyB]

Charitable spirit repaid when illness strikes
Diagnosis sends patient overseas
By Heidi Atkin
Close-Up Correspondent
Article Last Updated:10/12/2006 02:58:16 PM MDT

Jim Soto is known for his generosity to co-workers who are employed by Salt Lake City.
In the past, he has helped them with mortgage and car payments.
"I'd help them out from payday to payday because I've always been one to give - and I just enjoy helping people," said Soto, who lives in Sugar House.
That's why city employees are happy to help Soto in return.
Soto is currently on long-term disability because, after 29 years of employment with the city's public utilities department, the 54-year-old can no longer do his job without threatening the safety of himself and his co-workers. He was diagnosed in January with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. He is set to retire this month.
Lou Gehrig's disease is a fatal condition in which the motor neurons in the brain and spinal cord are damaged over time and restrict control of movement. Typically, patients will exhibit loss of control in their extremities, breathing, swallowing and other types of movement until they ultimately become completely paralyzed.
Soto's speech is slurred and he has no movement in his right hand, but he still maintains a significant amount of movement. On average, someone diagnosed with the disease lives from two- to five years.
To give himself a fighting chance, Soto left for the Dominican Republic in September to try
human fetal-stem-cell therapy. Stem cells will be intravenously injected into Soto. Purportedly, the stem-cell therapy fixes motor neurons in the brain and spinal cord, restoring some of patients' motor function and repairing damage before more is lost. The procedure costs $30,000 - a price that puts it beyond the reach of most people who opt for elective treatments that insurance companies won't pay for.
That's where Soto's friends, family and co-workers have stepped in to help.
Earlier this year, they raised $8,000 for his treatment at a benefit golf tournament. The American Federation of State, County and Municipal Employees, Soto's union, raised another $9,000 at a fundraiser last month.
Union official Patty Rich says it was the least that members of the union could do, given Soto's generosity. She said she is dismayed that Soto has to travel so far and pay so much for medical help.
"We [Americans] shouldn't be running behind the eight ball; we should be ahead," Rich said. "It's a tragedy."
Some are skeptical and claim the benefits of the therapy to many patients are dubious. Soto, however, remains hopeful.
"Hopefully, it will prolong my life," he said.

[John]

It's a pity to see all that money going to a scammer when it could go a long way to purchasing items that really would increase his enjoyment of life.

[Agios]

I agree...it's hard to blame anyone who is so desperate. I hope that newly diagnosed PALS can benefit from veteran PALS who have tried alternative or experimental treatments without beneficial results and are willing to speak out about their experiences.

Maybe a thread should be started...

[Lorainemarie]

I think that somebody should develop a standard response letter to these type of articles. Then whenever you see an article like this you should locate the email address of the reporter who wrote the article and send the reporter your standard letter. The letter should cite any legitimate sources that debunk this "treatment" and it would try to pitch the reporter on writing a story about how desperate people are preyed upon. You could detail how these questionable treatments can even involve legitimately trained doctors. You could even offer yourselves as interview subjects willing to reveal their own experiences as financial victims in order to help others. You could make it a group letter and sign it with a number of names, hometowns, and email addresses welcoming the reporter to contact anybody on that list for a somewhat local interview. No reporter wants to feel they unwittingly participated in a scheme to rip somebody off. The reporter might be motivated to try and correct the situation. This way you could do something about this problem without trying to confront the family of the newly diagnosed ALS patient directly. Once people start raising money for some treatment they aren't going to feel right spending that money on something else... but if a reporter debunks the "treatment" and the new debunking article includes a quote from a legitimate person with ALS saying "they wish they had spent the money on customizations to their home"... this gives the person a way to redirect the money without appearing dishonest.

[heidisatkin]

Unfortunately, you missed the thread of the article. It was about the fundraiser and the community spirit and less about the treatment. If it was about the treatment, however, we would have paid special attention to your concerns. There are many treatment facilities and doctors, all of which claim to have the "magic" cure, a cure which currently has no scientific backing. Unfortunately, like I said, the article wasn't about stem cell treatment options. Perhaps you could pitch a story to your local newspapers if you want stories done on what you perceive is a scam.

Good luck.

Heidi Atkin