Carrie Koenig, Programs Director at Hemophilia Federation of America, stepped outside her role as staff of HFA and used her experience as a mom of a child with hemophilia to write an article, which appeared in The Daily Record in Maryland on Feb. 18, 2021. Read Carrie鈥檚 piece:

In addition to the devastating health impact of COVID-19, the pandemic has also caused undue financial stress on Maryland families, forcing many to choose between their health and financial stability. Unfortunately, some health insurers are making matters worse by preventing patients from utilizing critical financial assistance that helps make health care affordable.

Maryland legislators should join Del. Pat Young and Sen. Joanne Benson in supporting House Bill 167 and Senate Bill 290 to protect financial assistance and ensure that Maryland patients and their families can access the health care they need.

As the mother of a son with hemophilia, I know firsthand how expensive health care can be. My son Nicholas was diagnosed with hemophilia when he was 2 days old. At 11 months old, Nicholas suffered from his first bleed and ended up in the emergency room for multiple intravenous infusions, which at the time cost up to $5,000 per infusion.

When Nicholas was 15 months old, our family began discussing preventive health care plans to stop him from having bleeds. Nicholas is now 10 years old and able to manage his condition with essential, regular treatments to prevent bleeds, helping ensure that he will be able to walk as an adult.

My son -鈥 and other people living with chronic and life-threatening conditions, like arthritis, psoriasis, multiple sclerosis, cancer, etc. -鈥 relies on complex or expensive treatments to manage his condition. For my family and many others, financial assistance provided by nonprofit organizations or drug manufacturers is the only way to afford the out-of-pocket costs associated with the medications needed to stay healthy.

I grew up watching my father, a severe hemophiliac, struggle with the effects of the disease because he did not have any treatment growing up. Today, we are lucky to have treatments that help Nicholas avoid the pain that my father experienced. But copay assistance is necessary for my family to afford his treatments, just as it is for many Maryland families.

Co-pay 鈥榓djustments鈥

Unfortunately, health insurers have begun implementing programs called 鈥渃opay accumulator adjustment programs鈥 that prohibit copay assistance from counting toward patients鈥 deductibles and out-of-pocket maximums. In effect, copay accumulator adjustment programs end up causing out-of-pocket bills to be paid twice: once from copay assistance programs and then again from the patient鈥檚 own pocket.

This unfair practice ends up punishing the patient for needing to use copay assistance in the first place. Copay accumulator adjustment programs are incredibly damaging to patients living with chronic conditions, like my son Nicholas.

If copay assistance is not counted toward my family鈥檚 cost-sharing requirements, Nicholas 鈥- whose condition is managed with high-cost medication -鈥 would be in an incredibly precarious situation. For us, not being able to afford Nicholas鈥檚 current treatment would force us to take him to the ER on a regular basis, which would push our family into irreversible financial hardship.

Other individuals facing this dilemma, might abandon their doctor-prescribed treatment altogether, with terrible consequences for their health.

Fortunately, there is legislation under consideration in the Maryland General Assembly that would help make all copays count for patients. SB 290 and HB 167 would require that all payments made by patients, either directly or on their behalf, are counted toward their deductibles or out-of-pocket maximums. With the protections in these bills, patients with chronic and rare conditions could continue affording their treatments without breaking the bank.

My 10-year-old son with hemophilia can live a normal life but only if our family can continue to afford his life-saving treatments through the help of copay assistance. As deductibles continue to rise and patients are affected financially by COVID-19, Maryland families should not be punished for using copay assistance to help them afford the treatments they need.

That鈥檚 why Maryland legislators should support their colleagues, Benson and Young, in standing with patients and immediately passing SB 290 and HB 167.

Carrie Koenig is the mother of a son with hemophilia in Maryland and a member of the Hemophilia Foundation of Maryland.

The article originally appeared Feb. 18, 2021:聽Making health care in Md. more affordable

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