Illness, 4 walls closing in on Arkansas woman; rare disease complicates insurance

SEARCY — Becky Malin is starving to death.

Creases on her torso show the imprints from her intestines pushing at the skin on her stomach. She has started to retain water, bloating from malnutrition. Her hair, which used to hang down to her shoulders, is cropped close to her head and falling out in dark-brown clumps.

Becky, 27, has been shut in her apartment for the past eight months, hiding from the irritants that make her immune system react — changes in the weather, almost all antibiotics, perfume, pepper, even laughing too hard can cause her to go into anaphylactic shock.

Because of her disease, Becky’s body has trouble absorbing most foods, leading to malnutrition.

She has been diagnosed with mast cell activation syndrome, a rare disorder that affects almost every part of the body. Statistics on the number of people who have a mast cell disease vary because it is difficult to diagnose.

Mast cells are a type of white blood cell and part of the human immune system. They exist in almost all parts of the body and help maintain equilibrium. When someone has a mast cell disease, aberrant cells overreact.

What might make an unaffected person sneeze can cause Becky’s throat to close.

“It takes my body over,” Becky said. “Mast cells are in every tissue. Every organ. Every bone.”

Treatment for this syndrome is expensive and is complicated by the variety of ways it manifests.

Many insurance companies do not cover treatment for it, said Lisa Klimas, a Massachusetts-based advocate for those with mast cell disease.

Klimas, who has a version of the disease, has been studying it since 2013. She has a master’s degree in biology, and her graduate research focused on microbiology and infectious bacteria. Her website, MastAttack, gets close to 4,000 views on an average day.

“It [treatment] should not be very expensive, but it is,” Klimas said. “Insurance companies don’t like to pay for it. … It’s something that’s a huge struggle for most of us.”

Becky, who had her first reaction when she was 2 months old, received at least four denial notices from Medicaid in March alone. Among the reasons cited for not paying for X-rays and needed shots: “Benefits exceed maximum of $500 per state fiscal year” and “Injection requires a specific diagnosis code.”

Becky provided the Arkansas Democrat-Gazette with screenshots of emails that document her most recent complaint to Medicaid, submitted online Sept. 25. She has not received a response, she said.

The ICD-10, Medicaid’s list of covered illnesses, contains several forms of mast cell disease, but Klimas said Arkansas’ limits on coverage are among the most restrictive in the country.

Becky said a contributor to her low level of care may be a lack of mast cell specialists in the state.

“It’s not just Arkansas, but Arkansas is a good example of a state that is doing a massive disservice to their patients with mast cell,” Klimas said.

Klimas works with mast cell patients across the country and said they often are denied care because a proposed treatment isn’t approved or recommended by the U.S. Food and Drug Administration.

“This means that patients are told their diagnosis is covered, only to discover this is meaningless when [Medicaid] will not cover any therapies the patient actually needs,” she said via email.

Online searches of mast cell support groups and forums reveal patients’ complaints of denials and requests for advice. While some reported success after appeals to insurance companies, others said they could not find care or get insurance coverage.

A spokesman for the state agency that oversees Medicaid in Arkansas said that denials like those Becky has received may be a result of a billing error or treatments not meeting the guidelines outlined by the program.

“We don’t just blanket not cover illnesses,” said Amy Webb, a spokesman for the Arkansas Department of Human Services.

Valerie Slee, vice chairman of the Mastocytosis Society, a nonprofit that researches and advocates for people with mast cell disorders, said mast cell diseases were added to the ICD-10 in October 2016 after nearly three years of work.

Despite coverage from Medicare and a supplemental health plan, Slee, who has mastocytosis, said she had a medical bill of just over $777,000 last year.

Because mast cell disorders are inherited, family members often take to trading medications when they can’t afford to fill prescriptions, waiting for insurance coverage to come through, Slee said.

Klimas said medical professionals often disagree on treatment methods, partly because many doctors are unfamiliar with the disease, which may also complicate getting payments from insurance providers.

“Whenever you have a disease that’s complex, there’s always going to be treatment options,” said Slee, who has been in advocacy work since 2002. “I don’t think that should be a decision that’s managed by the insurance companies; it should be managed by the physicians.”

Becky has gone through surgeries, chemotherapy and countless series of injections.

Since her body cannot absorb most food, she gets nutrition and medication primarily from an IV bag and port attached to her chest. The bag hangs on the white walls in her apartment, which is fitted with small hooks so she can move more easily from room to room.

She also has switched doctors many times over the years, settling back on the Searcy doctor who delivered her.

Messages left with the doctor’s receptionist asking for comment were not returned.

Becky cannot work because of her disease and relies on Medicaid for coverage of her health needs. But Medicaid has denied her claims for payment for treatment repeatedly over recent months.

“Medicaid, in particular, is very fond of only paying for certain things for certain diagnoses,” Klimas said.

Klimas said she worked in the pharmaceutical industry for a decade, often dealing with insurance companies that denied coverage of certain treatments for rare diseases.

For Becky, things got difficult when she switched from ARKids First insurance to Medicaid, she said. Her diagnosis has switched from leukemia to Pott’s disease and finally to mast cell activation syndrome.

Becky said she gets some supplies through Medicaid, although not enough to properly treat her condition.

Because she has hit so many roadblocks with health care, she has taken to treating herself, cleaning IV tubes with dollops of Germ-X pumped onto a cotton ball because she can’t afford to replace the medical equipment.

“I’m afraid that they’re going to take all my services for treating myself, but I don’t want to die,” Becky said, choking over her tears. “I was born without a chance.”

Most people who die from mast cell disease die because of secondary illnesses related to the disorder, Klimas said.

“For Becky, I don’t think there’s one big question except how long can a person live like this?,” said Klimas, who helps advise Becky on her treatment. “Most mast cell patients who die, die because they can’t get the care they needed or they can’t afford the care they need.”

Becky said she generally receives about two EpiPens per month from Medicaid, although she went through seven in March. In “good months,” she hoards them, saving them for the bad months. EpiPens — rapid epinephrine injectors for allergic reactions — cost about $600 on average for a package of two.

Medicaid covers two EpiPens per day for its patients, Webb said.

Slee said patients like Becky who struggle with frequent allergic reactions often have higher medical bills, which are nearly impossible to pay if the person is on disability. Becky is on Social Security benefits for disability, Becky said.

“For somebody that’s already living on disability, it’s a huge amount of money,” Slee said. “For the first five months of the year, we [mast cell patients] are so strapped because every time I go to the pharmacy it costs a fortune.”

Becky started carrying an EpiPen when she was in middle school, after she had a severe allergic reaction in the fifth grade.

She had an ear infection and was taking antibiotics to clear it up. She sat in computer class, her fingers clicking across the keys, when she felt what seemed like ants crawling up her tummy.

A quick look revealed that hives were breaking out across her stomach and chest. She walked to the front of the room and asked her teacher for permission to go see the nurse. He said no, but changed his mind when the hives began crawling up her neck.

Becky spent the next several hours in an emergency room while nurses hurried to stabilize her breathing. Anaphylaxis is one of many symptoms of mast cell disease, which is associated with other disorders like Ehlers-Danlos syndrome and Pott’s disease.

Becky experiences almost constant nausea, a racing heart every time she stands, clouded thoughts from malnutrition and the sensation of lava in her bones.

The disks in her spine are also deteriorating — by the time she entered high school, surgeries on her back left her unable to walk.

She continued attending Augusta High School and participated in Upward Bound, an early intervention program intended to help low-income students prepare for college.

That’s where she met her husband, Jarod Malin, now 29. They were in Upward Bound classes together. The building was not wheelchair accessible. So, Becky, then 15, had to sit outside on the stair landing, straining to hear what was going on inside the classroom.

One day Jarod had enough of watching Becky sit and wait. He scooped her up, told a classmate to grab her wheelchair and carried her into the room with the rest of the students.

“You should be involved,” he said, rolling her up to a table.

The two have been inseparable ever since. Becky calls him her “knight in shining armor.” They moved in together after Becky dropped out of college.

She was studying English at Harding University with hopes of being a special-education teacher, but she said the campus wasn’t accessible enough — and her health was quickly deteriorating. When her care through ARKids First ended, she had to focus full time on getting signed up for Medicaid.

Jarod takes care of her in between shifts at Dirt Cheap, a discount retail chain — helping adjust her IV, making sure she takes her medicine and ensuring that she is comfortable.

“Do you want anything while I’m in here?” he asked Becky while he grabbed a soda from the kitchen.

“Honest, I’m feeling nauseous,” she replied. “I just want that bag to finish. My heart’s going pretty fast. I took my meds, though.”

He stared at her for a long moment before replying: “OK. If you need me, holler,” and he disappeared into the bedroom to start another load of laundry.

Jarod earns just above minimum wage, enough to keep the Internet on for his wife so she has some connection to the outside world.

When things inside the apartment get too much for him, he splurges, taking a couple of dollars down to the Wal-Mart to play on the claw machine.

Jarod gives the toys he wins to children. Becky has had three miscarriages over the course of their marriage.

Becky said the two of them like to help people, taking in or mentoring adults who have mast cell disease as a sort of replacement for the children they will never have.

“We help a lot of people. We don’t have kids of our own, so when grown people come into our lives that are just as lost as we are …,” she trailed off and pointed to the wall of photos in their living room. “I work with other patients.”

The couple doesn’t have cellphones or a car. They order the things they need on Amazon, and packages with food and medicine are dropped off at their front door, where a handwritten note warns visitors not to enter if they have food, a fever or any red dyes.

Becky spends her days huddled in their bedroom, sometimes on the phone with doctors, sometimes reading poetry and books on a Kindle that, like her eyesight, barely works anymore.

Becky estimates that without proper professional treatment she has a year left to live, at most.

“Usually, I don’t sleep at night, and, honest, it’s a mental thing,” she whispered. “I want to see the sun. I want to see the new day before I can go to sleep.”

SundayMonday on 10/15/2017

Print Headline: Illness, 4 walls closing in on Searcy woman; Rare disease complicates insurance

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