Health care refugees: Medical marijuana and new hope

December 5, 2016
First Harvest Financial

Parents Rich and Kim Muszynski have learned to tell the warning signs of their 5-year-old daughter’s grand mal seizures; first, her pupils become enlarged as she stares off into the distance, seemingly for miles.

Then, the rest happens: her arms and legs shake, and she begins to gasp for air.

Abby had unsuccessfully tried eight different seizure medications by the time she had turned three years old. In fear for their daughter’s longevity as her condition worsened, Abby’s parents made a three-hour trip to Dr. Ngoc Minh Le in Orlando, a renowned, board-certified pediatric neurologist and epileptologist.

Le had informed the Muszynski’s that using another anti-seizure drug on Abby would most likely prove to be ineffective. Then, he recommended an alternative: medical marijuana. Coincidentally, Gov. Rick Scott had legalized a strain of non-euphoric marijuana called Charlotte’s Web just months prior to their meeting with Le.

Charlotte Figi, another young girl with epilepsy, had seen unprecedented success with Charlotte’s Web. Dr. Sanjay Gupta’s CNN documentary “Weed” features the Muszynski’s and their story.

While Abby’s conditioned improved with Charlotte’s Web, it only did so slightly; she was still experiencing two grand mal seizures a week, with each lasting approximately eight minutes. Le had to explain to Abby’s parents that because Charlotte’s Web contains only minimal amounts of THC, it was unlikely to be a viable treatment option.

In mid-2015, which is when they had consulted with Le, marijuana with a high THC concentration was not legal in Florida for Abby. In order to obtain cannabis that had a sufficient amount, the Muszynski’s would have to relocate and leave behind their friends and family, which included two of their older children.

Colorado, the state where Charlotte Figi lived, was the first option. After checking with parents of disabled children in the area, Abby’s mother found out that the state’s Medicaid program was very fair and effective.

There was one more problem, however: travel. Doctors had told Abby’s parents that long car drives and flights on commercial airlines were out of the question. Left with no other option, Abby’s parents began their final battle with Florida Medicaid.

In mid-August, Kim declared she had been in contact with Medicaid officials about getting air ambulance transportation for Abby to Colorado. On the 19th of September, Rich drove the family car out to Colorado. The plan was set for Kim to attend the closing of the family’s Florida home in Boynton Beach on September 23and travel on an air ambulance later that afternoon.

On September 20, a nurse supervisor at Children’s Medical Services at the Florida Department of Health sent Kim an optimistic email: “Please give a call today so we can finalize travel arrangements!” Everything seemed to be in order.

However, there was still no final approval, even after several more days had passed. With Rich on his way to Colorado with Abby’s equipment and the family’s home sold, Kim and Abby had nowhere to go. They were forced to temporarily move in with a friend, where Kim and Abby slept on the floor.

Abby’s cries kept her friend’s family awake at night; something had to be done. So, Kim wrote emails once again, begging for help. This time, however, she sent it to someone she hadn’t before: a CNN reporter.

After three days, Kim was informed transport was approved.

Florida’s Agency for Health Care Administration had a spokeswoman issue a statement regarding the matter:

“In this case relocation services are not covered by Medicaid, per federal Medicaid guidelines. However, thanks to Safety Net funds made available by Governor Scott and the Legislature, the state supported this family by covering the costs to provide relocation services via the air ambulance of the mother’s choice. Working with the family, the state arranged transport as quickly as possible,” said Mallory McManus.

On September 28, Abby and Kim were taken by flight to Boca Raton airport. As Abby’s stretcher was loaded onto the plane, her grandmother said a prayer over her.

In reference to their relocation, Kim said she felt like a refugee.

“I feel like I’m being forced out of my home,” she lamented.

Rich waited in Colorado Springs for his wife and daughter to welcome them to their new home.

“The most incredible thing I’ve ever seen.”

After only a few weeks of living in Colorado, the family had experienced even more miracles.

To their surprise, Kim and Rich found that the high-THC marijuana administered to Abby almost entirely rid her of the grand mal seizures. She had previously been afflicted with between two and four seizures a week, each lasting between eight and 12 minutes. At her new home, she has only averaged one per week, and they last only seconds. A single drop of high-THC oil under Abby’s tongue stops her seizures almost instantly.

“It’s the most incredible thing I’ve ever seen,” her mother said.

She hasn’t visited the hospital in Colorado for seizures a single time.

The second miracle they experienced was just as good: Colorado Medicaid covered all of Abby’s prescriptions and doctor’s visits. All the time saved from not fighting with Medicaid allow Kim to spend more with her daughter.

With the seizures eliminated, Abby can finally begin to develop as a child; she can now pick up and move blocks, and even grasp utensils.

Her parents are elated to finally see her personality. Now, she giggles often, at things like balloons and bubbles.

Her parents are hopeful that Abby will one day learn rudimentary sign language to express herself to those around her. One day, she might be able to take her first step, albeit with a walker and other forms of support.

Although Abby’s health has drastically improved, the move has taken a toll on the Muszynski family. After living in Colorado for two weeks, their older daughter, Cristina, FaceTimed them from Florida to show her proud parents her new driver’s license.

While Kim was elated of her daughter’s achievement, she soon came to tears; Kim had missed an amazing milestone in Cristina’s life. This brought to mind all of the other things that she would miss: cooking Thanksgiving dinners, shopping for a prom dress, and prom itself.

Cristina, who is now living with her biological father, has recently been suffering from dizziness and fainting. Kim is heartbroken that she is not there to offer her support.

On November 8, only six weeks after the family had moved to Colorado, voters in Florida had approved a ballot that would give patients like Abby access to cannabis with high THC levels, similar to those in Colorado.

Two months after their relocation, Medicaid allowed them to receive Diastat, an anti-seizure drug they had previously fought for.

Despite these occurrences, the family still would have left Florida.

The Medicaid program in Florida was too unreliable. They were in constant fear of it failing to pay for Abby’s medicines or equipment. They were also afraid her respiratory therapist would inform them Abby was no longer eligible for her program, which had occurred three times within three years.

“Florida was unable to meet the needs of our medically fragile child. It ultimately could have resulted in her death.”

Abby is not alone.

Medicaid experts have a saying: when you’ve seen one Medicaid program, you’ve seen only one Medicaid program. This is due to states having a large amount of leeway regarding how they implement their programs. Almost four out of every ten children in the US are on Medicaid, and what is the norm in one state can be completely different in another.

There is no official ranking for Medicaid programs, but there is data that can be used to determine which is best for one’s situation. Some state Medicaid programs pay doctors very little, which deters them from accepting new patients. Florida pays 13% lower than the national average, making it the fifth lowest state in Medicaid payments, according to a 2014 analysis by Urban Institute.

McManus, who is the spokeswoman for Florida’s Agency for Health Care Administration, pointed out that Urban Institute data is based off of physician rates that are categorized as fee-for-service, but the Medicaid program of the state handles managed care plans. The state of Florida has declared that it is undergoing an active transition to a managed care system.

“These rates do not reflect how the majority of Medicaid providers are paid,” she stated.

The lead author of the Urban Institute report, Stephen Zuckerman, declared that there is not much of a difference between fee-for-service and managed care. He sites a report by the US Government Accountability Office, which is a nonpartisan agency employed by congress, that illustrates there is only a 5 percent disparity between the two.

Critics of Florida’s Medicaid program frequently cite a report led by Joan Alker, the executive director for the Center for Children and Families at Georgetown University.

Data from pediatricians who participated in a short survey declared “challenges exist for children enrolling in and accessing care through Florida’s managed care system” and “barriers to getting their patients the prescription and over-the-counter medications they needed were also a serious concern for pediatricians.”

Critics of the Georgetown report claim that it is biased; Dudek, the secretary Agency for Health Care Administration, claims that less than 1% of physicians involved in Medicaid responded to the survey.

Advocates for Medicaid families declare that Florida is not the only state where patients are dissatisfied; it is not uncommon for families in other states to relocate like the Muszynski’s did.

“This isn’t unique to Florida, but Florida certainly has serious problems,” said Alker.

“These families already face incredible struggles. These families are my heroes.”

“They don’t need the state of Florida making it harder for them,” she stated. “The state of Florida should be making it easier.” For more information regarding health care refugees, [Click Here].