HARRAH, Okla. (KFOR) – An Oklahoma girl with a feeding tube says getting her specialised diet has turn out to be almost unattainable.
Sereniti Hughes has an eclectic style, filling her Harrah residence with do-it-yourself murals whereas surrounded by animals.
“I have about nine dogs – They’re adorable,” she added. “I just, I love my animals.”
The canine present a silver lining amidst what has been a bleak 12 months, after Sereniti acquired a feeding tube final winter.
She was identified with gastroparesis in 2018, after years of being unable to correctly digest.
“When she turned into a teenager, she started vomiting. Anything that she would eat would come up,” defined her mother, Amy Hughes. “She looked like a skeleton wrapped in skin.”
Sereniti is 21 years previous, and on Soonercare.
Her feeding tube method and materials come from the corporate Coram, owned by CVS.
Coram describes itself as a “leading provider of home infusion and tube feeding therapy.”
Sereniti and Amy say issues have been persistent since she moved to the feeding tube.
“Sending the wrong type of formula. They would send the formula for babies,” mentioned 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 the place she receives nothing. When KFOR met with Sereniti in early July, she mentioned she hadn’t truly acquired a package deal in almost two months. These packages are her solely supply of diet.
The household says it seems a lot of their points encompass a “letter of medical necessity.”
Sereniti says Coram requires a newly signed letter each month from her physician. But she and her mother say it’s not mandatory.
“The nutritionist said that you only have to do it when your prescription changes,” she mentioned. “Mine hasn’t changed at all.”
Compounding the issue, this month-to-month doc is faxed. Despite Coram’s insistence the paperwork have been constantly despatched, Sereniti says she and her docs have had points receiving these letters in a well timed style.
This letter clears the way in which for Sereniti to obtain her specialised method that gives peptide.
The method is accessible on Amazon. News 4 discovered some for sale at roughly $9 per unit. Sereniti wants 5 items per day, and has been hospitalized a handful of instances whereas ready for correct method.
Her mother says she’s been left to make unthinkable selections.
“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 mentioned. “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 households reporting related points in receiving important diet.
A spokesperson with C-V-S despatched the next assertion:
“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’ve constant issues 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 mentioned.
Amy says she’s been left to lean on mates, household and borrowing from her month-to-month funds, something to maintain Sereniti wholesome.
“We’ll go get junk metal, I’ll go do DoorDash, Uber,” she mentioned. “So, we literally beg, borrow to get what we need.”
There would possibly quickly be good news although for the household. News 4 contacted the Oklahoma Healthcare Authority.
They inform our staff Sereniti has been paired with their care administration staff. See their full assertion under:
“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 can imply a decision is coming.
We’ll test again.
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