HARRAH, Okla. (KFOR) – An Oklahoma woman with a feeding tube says getting her specialized nutrition has become nearly impossible.
Sereniti Hughes has an eclectic taste, filling her Harrah home with homemade murals while surrounded by animals.
“I have about nine dogs – They’re adorable,” she added. “I just, I love my animals.”
The dogs provide a silver lining amidst what has been a bleak year, after Sereniti received a feeding tube last winter.
She was diagnosed with gastroparesis in 2018, after years of being unable to properly digest.
“When she turned into a teenager, she started vomiting. Anything that she would eat would come up,” explained her mother, Amy Hughes. “She looked like a skeleton wrapped in skin.”
Sereniti is 21 years old, and on Soonercare.
Her feeding tube formula and materials come from the company Coram, owned by CVS.
Coram describes itself as a “leading provider of home infusion and tube feeding therapy.”
Sereniti and Amy say problems have been persistent since she moved to the feeding tube.
“Sending the wrong type of formula. They would send the formula for babies,” said Amy. “She’s highly allergic to latex. They would send the wrong tape.”
“I would just break out in hives everywhere,” added Sereniti. “I have scars all over myself because of that.”
Then there are the months where she receives nothing. When KFOR met with Sereniti in early July, she said she hadn’t actually received a package in nearly two months. These packages are her only source of nutrition.
The family says it appears much of their issues surround a “letter of medical necessity.”
Sereniti says Coram requires a newly signed letter every month from her doctor. But she and her mother say it’s not necessary.
“The nutritionist said that you only have to do it when your prescription changes,” she said. “Mine hasn’t changed at all.”
Compounding the problem, this monthly document is faxed. Despite Coram’s insistence the documents have been consistently sent, Sereniti says she and her doctors have had issues receiving these letters in a timely fashion.
This letter clears the way for Sereniti to receive her specialized formula that provides peptide.
The formula is available on Amazon. News 4 found some for sale at roughly $9 per unit. Sereniti needs five units per day, and has been hospitalized a handful of times while waiting for proper formula.
Her mother says she’s been left to make unthinkable choices.
“I have to choose between feeding my daughter and, you know, paying my mortgage, paying my electric. Of course, my daughter’s gonna come first,” Amy said. “This is my baby. You know, she’s got a lot of problems. If these people would just get her what she needs she would be okay.”
Coram has an F-rating with the Better Business Bureau, with a handful of families reporting similar issues in receiving vital nutrition.
A spokesperson with C-V-S sent the following statement:
“A signed Certificate of Medical Necessity (CMN) is required by the patient’s insurance, not Coram. Our multiple previous attempts to contact the patient over several months to obtain a signed CMN from her physician were not successful. The patient contacted us last week and we sent a CMN to both her and her physician to be signed. As of today, we haven’t received it back. We will continue outreaching to our patient to address her nutrition health needs and help facilitate the signed CMN required by her insurance.”
Sereniti and her mother say they have consistent problems reaching Coram.
“Every time we try to call, it’s like 30 minutes to an hour plus. And I’ve tried like eight times, never answered,” Sereniti said.
Amy says she’s been left to lean on friends, family and borrowing from her monthly budget, anything to keep Sereniti healthy.
“We’ll go get junk metal, I’ll go do DoorDash, Uber,” she said. “So, we literally beg, borrow to get what we need.”
There might soon be good news though for the family. News 4 contacted the Oklahoma Healthcare Authority.
They tell our team Sereniti has been paired with their care management team. See their full statement below:
“OHCA’s desire is to always assist and equip our members to reach an optimal level of health. We are happy to report Miss Hughes is now paired with our care management team to help navigate her health journey, which will ensure 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 this will mean a resolution is coming.
We’ll check back.