South Florida

$2.2 million surplus raised for little girl’s care. Now what happens to the extra money?

Aventura mother pleads for help to raise $2 million for baby’s treatment

Shani Cohen pleads for help to raise money to treat her infant daughter Eliana. A campaign on Jewish crowdfunding site The Chesed Fund raised more than $2.2 million in five days after an Aventura baby was prescribed the world’s most expensive drug.
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Shani Cohen pleads for help to raise money to treat her infant daughter Eliana. A campaign on Jewish crowdfunding site The Chesed Fund raised more than $2.2 million in five days after an Aventura baby was prescribed the world’s most expensive drug.

It wasn’t quite a miracle, but it was certainly an unexpected gift: Just a few days from a critical cutoff date, the family of a little Aventura girl with a terrible genetic disease learned that 24,000 people contributed a total of $2.2 million to a crowdfunding site to help them pay for what has been billed as the world’s most expensive drug.

For Eliana Cohen to overcome spinal muscular atrophy, doctors said she had to receive a treatment that included the drug Zolgensma before her second birthday. Eliana turned 2 on July 20. The drug’s cost was a prohibitive $2.1 million and insurance companies had refused to cover the cost so the couple took to social media with an appeal for emergency help.

Jewish leaders in South Florida and around the world considered the massive fundraising that resulted a “hashgacha,” the Hebrew word for divine providence. Then came another hashgacha, when a “private individual” came forward with a single matching donation of over $2 million. Almost immediately after getting the matching gift, Eliana’s parents Ariel and Shani Cohen, emailed thousands of initial donors thanking them for their charity and saying that, if requested, donations would be returned.

But the Cohens’ letter also said the family would prefer “to have the funds that you so kindly donated to our campaign be re-allocated to a tax deductible fund to assist with Eliana’s additional medical expenses.”

That suggestion to keep the remaining donations raised some eyebrows in South Florida’s Jewish community, said Michael Rudd, a board member of the Greater Miami Jewish Federation. The Federation itself had joined the effort, emailing more than 50,000 people to try and help Eliana after members viewed a video of the child’s mother begging for help on YouTube.

“If someone donated funds for Eliana’s drugs, it’s not fair then to go back and request that their money be used for a different purpose,” he said.

Rudd, who has a 16-year-old son in a wheelchair who has suffered from the same illness most of his life, said a statement in the video that Zolgensma was a “life-saving drug” was a bit misleading. His son takes a different drug each year to slow the effects of the debilitating disease, which weakens patients and can eventually rob them of their ability to walk, eat or even breathe on their own.

But Zolgensma is considered a breakthrough gene-therapy treatment, medical experts say, because it’s a one-time procedure that mainly requires physical therapy afterwards, not follow-up dosages, and can reduce the impacts on developing children.

Kenneth Hobby, president of Cure SMA, a Chicago organization that helps fight the disease, said the drug works best the earlier a child is diagnosed.

“The treatment stops it from getting worse,” he said. “Then it’s mainly physical therapy and nutrition.”

Rudd said he was aware his reaction was ”colored by the fact that my son has SMA.” Still, he said if the drug proves successful for Eliana, the family would not be running up millions in additional medical treatments.

In a reaction to similar concerns raised by others, a group of rabbis instrumental in the initial fundraising released a follow-up statement three days after the couple posted their note about the leftover money. The rabbis said it was important to offer donors “complete clarity” and that anyone requesting a reimbursement would receive one as “expeditiously as possible.”

Rabbi Yosef Galimidi, who leads prayers at Aventura’s Edmond J. Safra Synagogue, the Sephardic temple the Cohens attend, attributed the Cohens’ letter to “too many people trying to help, too many cooks in the kitchen.” Galimidi was one of four rabbis to sign off on the follow-up letter.

“I don’t know who put that in writing. We sent a clarification,” Galimidi said. “It was an unbelievable display of unity. The community came out in masses all over the world to help in this time-related danger.”

Galimidi said the Cohen family does not have access to the money and that it’s set up in a “special fund” that can only be accessed by the group of rabbis and others who took part in the fundraising. The Miami Herald was unable to confirm that as several calls and emails to the Chesed Fund, the Jewish crowdfunding site that raised the money, were not returned.

The Miami Herald has also been unable to reach the Cohens. They are “a quiet and unassuming” orthodox couple, Galimidi said, who wish to retain their privacy. The family’s attorney Maria Santi is out of the country until Aug. 11.

“I’ll be honest with you,” Galimidi said. “At this moment they are being shielded from everybody calling them.”

Eliana received treatment for her illness at Jackson Memorial Hospital on July 19, the day before her second birthday, which is the federal guideline cutoff date for the treatment. The rabbi said last week that it was too early to determine if the drug was having the desired effect and that doctors are watching to make certain there are no side effects.

“She’s in our daily prayers,” he said. “And only time will tell.”

Corporate records show the Chesed Fund Unlimited LLC is in good standing and registered in Maryland, where its resident agent also resides. Unlike many other crowd-sourcing sites, the Chesed Fund claims to be commission free.

Avi Kehat, the fundraising site’s chief technology officer, wrote a message on its blog in late July after the fundraising effort had finished. He said donations peaked at 45 per minute and that the family saved more than $100,000 in commission fees by choosing the Chesed Fund.

“The size and scope of this campaign marks a new milestone for the Chesed Fund. I could not be more proud of being part of this incredible enterprise...” Kehat wrote. “Miracles can happen. We see them every day on the Chesed Fund.”

Eliana’s case gained public notoriety on July 14 when her mothe,r Shani Cohen, took to YouTube with a heart-tugging message, begging people to help pay for the multimillion-dollar drug being offered by a subsidiary of pharmaceutical giant Novartis. Just under 2 years old, Eliana’s muscles weren’t developing properly, her legs lacking even the strength to allow her to stand on her feet.

At first, doctors believed Eliana simply needed physical therapy. An MRI came back negative. Finally the family’s doctor said Eliana should be tested for SMA, a rare condition that he simply wanted to rule out. The test came back positive. The only cure, the family was told: Zolgensma, which is believed to be the most expensive drug ever developed. About five hundred children a year are born with the gene defect.

With insurance companies unwilling to cover the cost, a family relative of the Cohens reached out to former WSVN Channel 7 reporter Rosh Lowe, now running a company called MicDrop which promotes storytelling and produces slick, edited videos. The 16-minute video released on YouTube shows Shani Cohen standing solo on a stage and tearfully explaining her daughter’s illness, interspersed with still pictures and videos of the child crawling, smiling and playing with toys.

Tens of thousands of people watched it. The video aired on July 14. Five days later with the help of the Chesed Fund, Eliana was undergoing the treatment.

Hobby, the Cure SMA president said it’s not surprising insurers aren’t certain how to deal with the cost of the drug because it’s still in its early stages. Florida’s Medicaid agency said it has covered the cost of the drug for two infants since May. It didn’t disclose whether Eliana was one of them.

“This is in some ways the first gene therapy approved,” said Hobby. “So insurers have to figure that out. But no individual or family should have to pay for it.”

Chuck Rabin, writing news stories for the Miami Herald for the past three decades, covers cops and crime. Before that he covered the halls of government for Miami-Dade and the city of Miami. He’s covered hurricanes, the 2000 presidential election and the Marjory Stoneman Douglas mass shooting. On a random note: Long before those assignments, Chuck was pepper-sprayed covering the disturbances in Miami the morning Elián Gonzalez was whisked away by federal authorities.
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