As Congress mulls AHCA, woman with CF wonders if it's safe to get married

AnnaPayne
Anna Payne and her fiance Kyle Ferretti at the Philadelphia Great Strides walk, a fundraiser for the Cystic Fibrosis Foundation.

Anna Payne is a hard working 30-year-old who has a great job at a bank, a loving mother and father, and a dog she pampers. When she met her boyfriend six years ago at work over a sandwich, it was love at first sight (or bite as Anna likes say). The happiest day of her life was when he proposed, down on one knee at their favorite restaurant.

But after the excitement of the ring and plans of a beautiful wedding day wore off, they started to think the union might not be such a good idea. It wasn’t cold feet or feuding families, a la Romeo and Juliet. This is a 21st century problem, not a 16th century one.

Anna’s concern: How might the American Health Care Act, the Republican “repeal and replace” program, affect her health insurance coverage? 

Medically, Anna is not like most young women. From her bright blue eyes and mischievous smile, you’d think all is well. But deep within her genetic material, there is something that makes her different.

A single defective code for a protein, one that helps all the cells in her body move chloride out appropriately, means she has cystic fibrosis, a disease with no cure but a lot of hope.

Anna’s parents found out she had CF right at birth when doctors noticed their little girl couldn’t pass any stool. In her second day of life, she had emergency surgery to relieve a life-threatening stomach blockage. Since then she has dealt with typical complications of CF, from multiple hospitalizations as a child and adult for pneumonia, to coughing up bright red blood, to inflammation of her liver and pancreas.

Every day there is a war to be fought, one that requires multiple inhaled medications, vigorous coughing to expel built-up mucus, and a fistful of pills before every meal to aid digestion. She never gets a break from this disease.

Yet one of the greatest medical stories ever told is the steady improvement of life expectancy for people like Anna. In 1950, babies diagnosed with CF usually didn’t make it past their second birthday. Now, that life span has grown nearly to age 40.

I believe we have a duty as Americans to provide Anna – and the 30,000 others in this country with CF – with the best care possible. That means stable and adequate health insurance to pay for life-extending medications.

Stability and adequacy are at risk if the American Health Care Act replaces the Affordable Care Act. One of the main issues for CF patients is how Medicaid is going to be changed, and effectively curtailed. As noted by the Cystic Fibrosis Foundation, Medicaid provides coverage for half of children and a third of adults with CF. By effectively ending its expansion in 2020, and cutting back on reimbursements, states are going to have to choose who gets coverage and who doesn’t.

Anna receives Medicaid through Pennsylvania’s program. In a show of sensible governing, Anna has benefited from the state’s unique Medical Assistance for Workers with Disabilities (MAWD) program. For those with a clear disability, there is no risk of losing benefits at a higher income cap than typical of Medicaid. In other words, you don’t have to choose between your job and your health. For  Anna, this program means she can cover a huge deductible she has every year for her very expensive medications.

But given that the Republican plan would cap federal Medicaid support per enrollee, it would endanger this plan. Anna would then be forced to seek some other type of Medicaid with more stringent income caps. Getting married would push her over the household income cap of $50,000 for the MAWD program.

With the budget cuts to Medicaid, however, it’s not even clear Anna could get on another type of Medicaid.

That's because Anna's Medicaid benefit was not even created by Obama’s Affordable Care Act, but is now up for cuts in the ACA's supposed fix. The new American Healthcare Act has indeed cast a wide net.

Standard & Poor’s estimated that between 4 and 6 million people currently enrolled in Medicaid plans would lose coverage if the proposed changes become law. This will include patients with chronic genetic illnesses like CF, sickle cell and muscular dystrophy.

The American Healthcare Act does keep some important protections, like being able to stay on your parents insurance until age 26, and making it illegal to deny coverage based on pre-existing conditions. The Affordable Care Act has flaws that need to be addressed. But curtailing services to the most ill and needy among us is not what is needed.

All of which is giving Anna Payne pause before making the leap into marriage.

Michael J. Stephen, M.D. is associate professor of medicine and program director of the pulmonary and critical care fellowship at Drexel University School of Medicine. 


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