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Sursum 25 januari 2017 12:34

Dit verhaal beschrijft de zorgen van een HAE Patient in the VS als gevolg van het afschaffen van Obamacare.

By Colin Miner (Patch Staff) - January 23, 2017

As far as Mary Graham is concerned, Donald Trump’s swearing in as president of the United States means the clock is ticking. She fears the clock is attached to a time bomb.

patch.com/oregon/portland/mary-fears-...

Mary Graham Sees Obamacare As Life-and-Death Struggle

"It will only be a matter of time before my insurance runs out," Mary Graham says. "I won’t be able to afford medication. And I will die.”

“All this talk of repealing the Affordable Care Act leaves me convinced that they will reinstate the lifetime cap,” she says of efforts by President Trump and the GOP to repeal the law better known as Obamacare.

In addition to expanding coverage to 20 million Americans, it eliminated the practice of insurance companies setting a limit of how much they will pay over a person’s lifetime.

While those caps would often be between $1 million and $2 million, and that might seem enough, consider the costs of medical treatments.

Consider the 15 million Americans diagnosed with cancer. Consider the long-term medical care needed for many of the 380,000 premature babies born in the United States every year.

Consider Mary Graham and what the cap would mean for her.

“For me that means it will only be a matter of time before my insurance runs out,” she says. “And then I won’t be able to afford medication.

“And I will die.”

Graham is 32 years old. She is married. She has a 7-year-old daughter. She has insurance through her job.

She also has Hereditary Angioedema.

HAE, as it’s called, is a rare, genetic, life-threatening blood disorder that causes body parts to swell for days or longer in mostly random episodes that vary in severity. Commonly, the face, hands and feet swell to disfiguring proportions. Most people with HAE suffer from swelling of the intestinal wall, which brings on bouts of severe stomach pain, nausea and vomiting.

When the swelling hits the airways, it can be deadly. People suffocate.

After suffering from the age of 12, she recently found a treatment that’s helping. It’s a treatment, though, not a cure, and she’ll likely need the drugs involved for her lifetime.

“Three times a week, I would drive out to a clinic in Lake Oswego where they would hook me up to an IV,” she says. “And it was working. And after awhile, I began to get the feeling that I could do this at home.”

So, she talked to the people at the clinic. Now, the meds are shipped to her house, and she gives herself injections every Wednesday and Saturday.

Luckily, she had insurance through a job she had found with a not-for-profit, where she still works, and an opportunity developed for her to participate in a clinical drug trial.

“After nearly 10 years of taking testosterone, which did not work, companies were developing drugs and looking for people to test them on,” she says. “I tried everything that became available.

“Oral medication, IV treatments, subcutaneous treatments,” she says. “If it was available, I was on board.”

Graham says it wasn’t just about helping herself, it was about helping people who would come after. But she found something that helps.

She hadn’t had much good happen to her for years, since she was a teenager attending Franklin High School in Southeast Portland.

“I met my husband,” she says of the man she married when she was 20 years old. “I would not have made it through high school without him. He saw me at my worst, and he never left my side.

“He would brush my hair when my hands were so swollen that I couldn’t hold a brush. He would practically carry me when I couldn’t walk. I would put my arm around him and he would hold me up. I wouldn’t be here today without him.”

About half of women who have HAE pass it to their newborns. The couple faced an excruciating decision.

“We were originally never going to have children,” she says. “From a moral standpoint, we just didn’t see how we could take the risk. There was a 50-50 shot that if we had a child, it would have this disease.”

They had a daughter and then had to wait one year before she could be tested for HAE.

She doesn’t have it.

“It started with my father, and it ends with me,” Mary says.

Her daughter turns 8 in March.

Which brings Mary back to thinking about her fears.

“She is so strong, so independent,” she says of her daughter. “I worry so much, though, about her future.”

If she loses her job, she loses her insurance, and if a cap on coverage is allowed, she’ll have no way of paying for her treatment.

“I need to have my medication every 72 hours,” she says. “If I don’t, within four or five days I won’t be able to move. It will only be a matter of time before I could die.

“I’m good as long as I have insurance. The problem is that if they install a lifetime cap on insurance, which is what they are talking about, I will quickly reach the cap, the insurance will drop me and no one will pick me up because I will have a pre-existing condition.”

Graham says she is generally an optimistic person, not necessarily looking through rose-colored glasses but believing positive outcomes are possible.

“But this scares me, these people considering lifetime caps and allowing companies to not cover pre-existing conditions,” she says.

“I don’t know how politicians can consider doing something that would just cast people aside, extinguish their flame.

“What really scares me is that I won’t be here for my daughter. That one night, I will go to sleep and have an attack. And my airway will swell.

“And I will suffocate in my sleep.”

Photo courtesy Mary Graham

[verwijderd] 25 januari 2017 13:14

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