“Trading Death for Pain and Financial Ruin”
03.19.2019
In 2014, Catherine Horine developed a persistent cough that would not go away. Within three months of first seeking treatment for the cough, even though her doctors had been unable to find a cause for her cough, they told her she would not live to see the end of the year without a lung transplant. At that time, Catherine was diagnosed with idiopathic bronchiolitis obliterans, a rare and irreversible disease that is extremely difficult to diagnose because its symptoms mimic chronic obstructive pulmonary disease (COPD). The condition causes inflammation and blocks airways in the lungs.
She has no idea how she contracted it.
While waiting to be approved for a lung transplant program, Catherine’s conditioned worsened and her doctors prepared her to die. She even met with hospice care representatives. Slowly, Catherine accepted the harbinger of death her doctors had delivered.
One year later, she received the transplant she needed to stay alive.
Trading One Disease for Another
Though the transplant saved Catherine’s life, she is now plagued with other conditions that were largely brought on by the post-transplant, anti-rejection and pain medications she now takes.
“I take 36 pills every day,” Catherine said. “I have a lot of side effects and there are days where I feel like a beat-up old Chevy. And just as my transplant doctors told me prior to the lung transplant, it is like I ‘traded one disease for another.’”
Besides the side effects caused by anti-rejection medications, Catherine is also managing Epilepsy, and interstitial cystitis, a debilitating chronic bladder condition that sends waves of crippling pain rippling across her pelvis. She sees her medical team three times each week for treatment. She said, “My quality of life is like someone who is on dialysis.”
“And half of my apartment looks like a pharmacy because of all my medical supplies, and the medications I take for either pain, side effects, or to ward off infection,” the Wheeling, Illinois, resident said.
Now despite all she’s already endured physically — overcoming a near-fatal lung condition and subsequent conditions — she is in a fight for her financial health.
The costs of Catherine’s drugs add up quickly. She pays $1,000 out-of-pocket every month for her prescriptions. That is exactly half of her disability income. She doesn’t have much left over for living expenses. And she finds herself in the Medicare Part D donut hole, early every year. When that happens, she has to pay even more out of pocket until her benefits renew at the beginning of the next year.
Bracing for Financial Ruin
The 63-year-old lives as frugally as she can to reduce her living expenses.
“I only allow myself a few haircuts each year,” she said. “And I’d like to travel to see my family, but I can’t afford it. My last vacation was 13 years ago. ”
She looks for sales at the grocer, keeps the heat as low as possible during winters and uses her air conditioner minimally during summers, forgoes sending clothes to the dry cleaners, having dinner with friends, or going to the movies. Catherine even stopped her tradition of baking Christmas cookies for family and friends because of how “quickly things add up.”
And after having to go on Disability from her career as a secretary, desperate to save money, she even sold her home and moved in with her parents — all in the name of saving a few more dollars each month to stay afloat.
“I just don’t understand why medications, especially like some of the pills I take that have been around for decades, have to be so expensive,” she said.” And people are rationing insulin. It just makes no sense.”
According to results from a recent Kaiser Family Foundation survey, nearly 3 in 10 people across the country skip doses or forgo filling prescriptions altogether due to high costs. Survey results also point to the public’s desire, across party lines, for Congress to implement policies to lower prescription drugs.
Catherine said, “Congress must do something.”
Like Catherine, Families USA also wants Congress to act to rein in exorbitant drug prices. And while, important efforts are underway in Congress, much more must be done. Meaningful reforms will take advantage of the federal government’s power to negotiate for lower prices. For example, Families USA supports a bicameral bill written by Committee Chairman Doggett (D-TX), the Medicare Negotiation and Competitive Licensing Act, which would allow Medicare to negotiate directly with pharmaceutical companies and to authorize generic competition when negotiations fail. Such a bill would greatly benefit Catherine, and the scores of Americans who regularly juggle medical care costs and basic needs such as food and housing.
Catherine said, “It’s so hard to know what my future holds. I hate the thought of having to use money from my mom’s retirement account. It should not break me to stay alive. It should not cost me everything I have.”