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Oklahoma mother and daughter fight over feeding tube supplies

HARRAH, Okla. (KFOR) – An Oklahoma woman with a feeding tube says getting specialized nutrition from her has become nearly impossible.

Sereniti Hughes has eclectic taste, filling her Harrah’s home with homemade murals while surrounded by animals.

“I have about nine dogs, they are adorable,” she added. “I just love my animals.”

The dogs provide a silver lining in what has been a bleak year, after Sereniti received a feeding tube last winter.

He was diagnosed with gastroparesis in 2018, after years of not being able to digest properly.

“When he became a teenager, he started throwing up. Anything he ate would come out,” explained his mother, Amy Hughes. “It looked like a skeleton wrapped in fur.”

Sereniti is 21 years old and on Soonercare.

The formula and materials for your feeding tube come from the Coram company, which is owned by CVS.

Coram describes itself as a “leading provider of home infusion and tube feeding therapy.”

Serenity Hughes, KFOR image

Sereniti and Amy say the problems have been persistent since she switched to the feeding tube.

“Send the wrong type of formula. They sent the formula for the babies,” said Amy. “She is very allergic to latex. They would send the wrong tape.”

“I would just break out in hives everywhere,” Sereniti added. “I have scars all over because of it.”

Then there are the months when you don’t get anything. When KFOR met with Sereniti in early July, he said that he had not actually received a package for almost two months. These packets are your only source of nutrition.

The family says it seems like a lot of their problems revolve around a “letter of medical necessity.”

Sereniti says Coram requires a newly signed letter each month from her doctor. But she and her mother say that is not necessary.

“The nutritionist said you only have to do it when the recipe changes,” he said. “Mine hasn’t changed at all.”

To compound the problem, this monthly document is sent by fax. Despite Coram’s insistence the documents have been sent out consistently, Sereniti says that she and her doctors have had trouble receiving these letters in a timely manner.

This letter paves the way for Sereniti to receive its specialized formula that provides peptides.

The formula is available on Amazon. News 4 found some for sale at about $9 apiece. Sereniti needs five units a day and has been hospitalized several times while she waited for the right formula.

Her mother says she has been forced to make unthinkable decisions.

“I have to choose between feeding my daughter and, you know, paying my mortgage, paying electricity. Of course, my daughter will come first,” said Amy. “This is my baby. You know, she has a lot of problems. If these people would get her what she needs, she would be fine.”

Coram has an F rating with the Better Business Bureau, with a handful of families reporting similar problems receiving vital nutrition.

A CVS spokesperson sent the following statement:

“Patient insurance requires a signed Certificate of Medical Necessity (CMN), not Coram. Our previous multiple attempts to contact the patient over several months to obtain a CMN signed by her physician were unsuccessful. The patient contacted us last week and we sent both her and her doctor a CMN to sign. To this day, we have not received it back. We will continue to reach out to our patient to address her nutritional health needs and help facilitate the signed CMN required by her insurance.”

Sereniti and her mother say they have constant trouble communicating with Coram.

“Every time we try to call, it takes another 30 minutes to an hour. And I tried like eight times, I never responded,” Sereniti said.

Amy says she has had to rely on friends, family and borrow from her monthly budget, anything to keep Sereniti healthy.

“We’ll go scrap metal, I’ll do DoorDash, Uber,” he said. “So we literally beg, we borrow to get what we need.”

However, there could soon be good news for the family. News 4 contacted the Oklahoma Health Authority.

They tell our team that Sereniti has been paired with their care management team. See his full statement below:

“OHCA’s desire is to always help and equip our members to achieve optimal health. We are pleased to report that Ms. Hughes is now paired with our care management team to help navigate her health journey, ensuring that she receives the proper medical equipment. The team is also completing a needs assessment to determine how to further assist her with any barriers she may encounter.”

Amy is hopeful that this means a resolution is coming.

We will consult again.

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