For some, life-saving medications can come at a high cost.
Indian Land resident Michelle Taylor knows this first-hand. Ten years ago, Taylor was diagnosed with pulmonary hypertension, a condition characterized by an increase of blood pressure in the pulmonary artery, pulmonary capillaries or pulmonary vein that can cause shortness of breath.
The condition requires Taylor to rely on oxygen and medications that are pumped through a permanent IV in her chest to live.
One of those medications, Tracleer, costs the Fort Mill Vision Center employee $35,000 a month. wo other medications Taylor has to take also cost her thousands more.
The price for her prescriptions would have been prohibitive when she worked full-ime. Now limited to sporadic hours when she can function, Taylor had to go on disability. That nets about 60 percent of the income she had working full-ime. Taylor qualified for Medicare, which helps, she said, but still requires copays ranging from several hundred to several thousand dollars.
“Right then I was in a panic,” she said. “I knew I couldn’t do it.”
To cover her medications, Taylor works with Caring Voice Coalition, a not-for-profit organization that helps those with life-threatening chronic diseases pay the high co-payments for medication.
“It’s been a great help,” she said. “I’ve been so lucky that I don’t pay for my medications because of the Coalition.”
Caring Voice supports 21 disease funds, including Huntington’s disease, narcolepsy and pulmonary hypertension, Caring Voice President Pam Harris said in an email. The Coalition’s programs are free for patients and their families.
“A diagnosis of a chronic disease often results in financial and emotional strain that deeply impacts a person’s life,” Harris wrote.
She said prescription co-payments often can stress those with already limited financial resources. Caring Voice provides grants to qualified individuals to lessen the burden of medication costs, according to the group’s website.
The high cost of some medications is a complicated issue involving the vast amount of money drug makers invest in research and development and the relatively short window companies have to recoup investments before patents expire and other companies can manufacture generic versions. The evolving state of health-care coverage in the U.S. is also a factor, according to various published reports.
Medications are only part of the financial burden Taylor faces. Declining health means Taylor is facing a possible double lung and heart transplant. She has been accepted into a program at Duke Medical Center, where she will have to go through weeks of medical testing in about a month.
Before she can be put on a donor list, Taylor said she has to raise $25,000 to keep in an account for living expenses during the year Duke would require her to live in Durham, N.C., prior to and after the transplant. She will also have to keep her house in Indian Land for when she returns.
Taylor said she will have to move to Durham to complete a six-week rehab program at Duke to build her lung strength before being put on the donor list and waiting for a potential donor.
“There’s a lot of waiting in this game,” she said.
Taylor said that the operation would cost an estimated $1.9 million. Medicare covers 80 percent of hospital stays and she would be required to pay the other 20 percent.
“It’s unreal,” she said. “I’m not one of those people that ever asks for help, but there is no other way I can do this. It’s a life-saving procedure.”
Taylor said she is looking into changing insurers, but open enrollment isn’t until October. She said there is a window where she is sick enough to need the transplant, but strong enough for the surgery.
Taylor said it’s also difficult to get supplemental Medicare insurance when you’re younger than 65 years old.
After the transplant, Taylor said, she wouldn’t have to take her pulmonary hypertension medications, but she would have to take a new set of medications that will cost $10,000-$15,000. Medicare will cover part of that.
“They are just so expensive,” she said.
Through a Go Fund Me page set up for Taylor, the community has raised more than $2,125 towards a goal of $5,000. A benefit held March 7 raised $4,200 toward Taylor’s medical costs. In total, $9,000 has been raised.
“It’s very overwhelming,” she said. “There are wonderful people out there.”
Taylor, who can’t walk a few steps without struggling to breathe, said her medications, which help control changes in her blood pressure, are critical.
“They are life altering,” she said. “Without help, there is no way I could take those medications.”
Taylor said her blood pressure has been known to rise to 80 mmHg, which is above the normal described by the Centers for Disease Control and Prevention. Her medications, she said, help keep her blood pressure from rising to the point of causing heart failure.
Taylor has been on her medications for six years. Every six months, she has to be re-approved for coverage through Medicare.
Taylor said many people with chronic diseases can’t afford the co-pays associated with their medications.
“You have to find out if there are people out there that will help you with your meds,” she said.
When she was first diagnosed, Taylor was told she had two years to live. With her medications, she has lived years longer.
“I appreciate so much everyone that has helped me so far,” she said. “You don’t want to give up your health because of the money.”
Want to help?
▪ To help Michelle Taylor with her medical expenses, go to gofundme.com/michelletaylor.
▪ For more information on pulmonary hypertension, go to phassociation.org.
▪ For more information on the Caring Voice Coalition, go to caringvoice.org.