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Arthritis Donor's Legacy, and Patient Care, at Risk

— In Florida, the state Attorney General's office has filed suit against the Arthritis Foundation

MedpageToday
A photo of the exterior of the Arthritis Foundation building in West Palm Beach, Florida.

For Nerida Zapata, 55, it's difficult to remember the awful times she experienced before becoming a patient of a free arthritis clinic in South Florida.

Eight years ago, Zapata, who has rheumatoid arthritis, could barely walk. Her feet were swollen, she was completely exhausted, and she was losing weight. Instead of visiting the beach when she had time to relax, she only could stay at home.

However, in 2014, a friend noticed her situation and took her to the main office of a clinic nearby. It was financially supported by the Arthritis Foundation through funds bequeathed by a local woman who had passed away more than 20 years earlier.

At the West Palm Beach facility, Zapata applied to become a patient of the clinic. When she was accepted, she recalled her doctors saying to her, "'Don't worry, we're going to take care of everything.'"

"And that's what happened," Zapata told 鶹ý. "He put me on medication and in a month, I was a different person."

Prior to receiving care through the clinic, Zapata couldn't afford appropriate healthcare. Her medications alone cost $5,000 a month.

Zapata is one of hundreds of uninsured or underinsured patients the clinic has helped in its lifetime.

It has done so through the last will and testament of former St. Lucie County resident, Mary Greissler. In 1994, Greissler specified that her estate be left to the Arthritis Foundation's Mid-East Florida Branch, provided that part of the funds be used for the purchase or construction of a permanent branch office and the remainder used to expand local programs and services "to reach and help more individuals in this area with the crippling disease of arthritis."

Now, that legacy is being challenged.

In September of last year, the Florida Attorney General's Office against the Arthritis Foundation over its proposed sale of a building constructed in 1997 with funds from Greissler's estate. And the litigation, which has included recent mediation between the foundation and the AG's office, remains ongoing.

The AG's office wrote in its complaint that it was first advised the Arthritis Foundation may have been considering a sale of the property at 400 Hibiscus Street in West Palm Beach back in 2002. At that time, the AG's office sent a letter to the national office of the Arthritis Foundation, advising that a sale or diversion of the property "would not only diminish the level of healthcare to the Palm Beach community, but would directly contradict the stated terms of the bequest."

The building was not sold at that time. However, in 2015, the Florida Chapter of the Arthritis Foundation was incorporated by merger into the national office.

In 2020, the national office advised individuals and organizations providing charitable arthritis-related care at 400 Hibiscus Street that it would no longer fund their activities, and ordered them to vacate the premises by January 1, 2021, according to the complaint.

"As a result, these service providers had to find new sources of financial support and to secure new locations in order to continue their much-needed work on behalf of persons suffering from arthritis," the AG's office wrote in its complaint.

Accordingly, the doctors who had volunteered their time and efforts to the clinic for many years turned to another source of support, CreakyJoints, which is part of the New York-based nonprofit, the Global Healthy Living Foundation. CreakyJoints announced in March of last year that it would replace the Arthritis Foundation in supporting the clinic after the latter organization ended its commitment to fund the clinic's operations.

In July, the AG's office received correspondence from the national office of the Arthritis Foundation that it was, again, considering a sale of the property at 400 Hibiscus Street, according to the complaint. It said it was doing so because there were no services to arthritis patients currently being conducted there, and the national office "'funds activities that benefit arthritis patients in other ways.'"

However, the AG's office argued in its complaint that the decision of the national office to sell the property is contrary and in violation of Greissler's will as well as to the terms of the purposes of the charitable trust created pursuant to the will's provisions.

"Because the national office no longer has a need for a permanent branch office and intends to sell the property, Florida statutes and the cy pres [as near as possible] doctrine permit the court to reform the terms of the will to require that the property continue to be used to provide services to individuals suffering from arthritis; to transfer the property to a different not-for-profit organization willing and able to act as a trustee with title to the property consistent with the charitable purposes as specified in the will...and to prohibit any future sale of the property without a court order permitting such sale and restricting sales proceeds to be held in trust for the benefit of arthritis sufferers within the branch counties," the AG's office wrote in its complaint.

It added that the national office is not permitted "to sell the property and to use the proceeds of the sale for any purpose it may choose, such as for officer salaries and bonuses, or to provide services outside the seven-county area."

Shawn Baca, MD, a rheumatologist and past president of the Palm Beach County Medical Society, is one of more than a dozen physicians who have continued to volunteer their time to care for patients of the clinic.

The clinic aims to fill in the gaps when it comes to access to healthcare, Baca told 鶹ý. It has employed a steadfast coordinator whom doctors and patients rely on for face-to-face services and a range of administrative capabilities, Baca said. The clinic also needs important lab work to be run and patient medications to be secured at a discounted rate through applications submitted to pharmaceutical companies.

Even if the building is sold, if the proceeds remain local, they could be used to maintain and expand care for both adults and children, he added. It also would fulfill the wishes of the donor.

When people donate money, he said, they deserve to know where that money is going and how it is being spent.

Michael Schweitz, MD, another physician who has long volunteered through the clinic, concurred.

"Our position is that these patients need to be taken care of," Schweitz said. "We need funds to be able to do that."

If the Arthritis Foundation is going to sell the building, it needs to provide an endowment with those monies that will fund the clinic, indefinitely, he said.

"They have this building that's now worth a fortune in the middle of downtown West Palm Beach," Schweitz said. "We don't know exactly what it's worth, or what they could sell it for -- it's in the many millions. It would not take a tremendous percentage of that sale to create an endowment for us, to maintain and grow and expand the clinic."

For its part, the Arthritis Foundation has argued that Greissler's will does not create a trust, and that it does not prohibit a sale of the property, according to legal documents filed in the case. The foundation has also stated that a sale of the building would not diminish the level of healthcare in the local community.

The foundation declined to comment on pending litigation and the specifics of any mediation in an email to 鶹ý. However, it simply said that its mission is "to find a cure for the number one cause of disability in the United States."

The Florida Attorney General's Office also declined 鶹ý's request for comment.

As for Zapata, she said she wants people to understand the extreme pain that can overtake people, like herself, with rheumatoid arthritis. She likened it to having needles stuck in her joints.

"It hurts every day," she said.

It's easy to take simple things for granted, like getting up from bed or taking a shower.

"It can be really hard, believe me," Zapata said. "You can be exhausted after taking a shower if you don't have the proper medication, the proper care."

She said she and other patients are extremely grateful for the many years the Arthritis Foundation provided them the care they need to partake in everyday activities. But she added that patients of the clinic were heartbroken to learn of the foundation's decision to empty and sell the building at 400 Hibiscus Street, especially when it happened at the start of the pandemic.

"That impacted me tremendously -- I couldn't believe it," Zapata said.

"I believe that Mary Greissler's last will and testament should be respected," Zapata said. "Those were her wishes, and her wishes should be respected. The building belongs to the patients, to the clinic."

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    Jennifer Henderson joined 鶹ý as an enterprise and investigative writer in Jan. 2021. She has covered the healthcare industry in NYC, life sciences and the business of law, among other areas.