At its worst, this condition left
me completely incapacitated: the arthritis in my hands, elbows, back, hips,
knees, ankles, and feet was so severe that I could hardly move. I needed support
to stand, shower, and dress; at times I couldn’t even hold a phone in my hand
to ask for help. When we finally found the right treatment, my world changed. Literally
overnight, there was a noticeable difference, and I continued to improve for
weeks and months. There is no cure for sarcoidosis, but thanks to my miracle
drug I’m able to participate in, and contribute to, my life and my community.
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| My miracle drug |
While I am incredibly grateful to have this treatment, I live in fear every day that my insurance company will suddenly decide to stop covering it, and I’ll go back to the way I was. For millions of New Yorkers living with many forms of arthritis, diabetes, multiple sclerosis, and more, this fear is very real. It’s reported that 75% of New Yorkers live with at least one chronic illness, and 51% live with two or more.* These diseases are often treated with injections or infusions, medications that can cost thousands of dollars per month. We are therefore very thorough when choosing health insurance plans each year, to ensure that our doctors and our treatments are covered. However, the law currently allows insurance companies to drop these medications from their formularies in the middle of a plan year, or to change the details so that we must pay more for them than we had agreed to. When this happens, families are left to choose between medication and food or rent, or take drastic and dangerous measures like rationing medication (not taking as much or as often as prescribed). Without adequate medication, these diseases progress, leading to permanent damage, disability, and even death.
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| Getting my infusion treatment |
Patients need to be protected,
and the plan contracts that we enter into must be honored. Earlier this year, legislation was introduced
to do just that. Patient advocates and
health professionals from across the state travelled to Albany to meet directly
with our State Senators and Assembly Members to discuss this bill (S2849A),
which would protect patients from losing coverage of already approved
medications or suddenly having to pay more for those medications in the middle
of a contract year; it would also ensure that we are notified of any upcoming changes
in advance of the open enrollment period, so that we can again do our research
and choose the best plan available to meet our health needs for the coming
year. We participated in letter writing
campaigns, and shared our stories via social media – anything we could do to
get this important message across. As a
result, we received overwhelming support from our elected representatives, with
the bill passing 56/6 in the State Senate and 146/1 in the State Assembly.
That’s why I’m calling on
Governor Cuomo to do what should be a very easy thing. This legislation has the vast support of
patients, caregivers, medical professionals, and the politicians we’ve elected
to represent us. Passing this bill will
save lives, reduce suffering, and improve quality of life. It will even lead to cost savings, as these
treatments can prevent more severe disease progression and disability. And insurance companies could still make
changes each plan year – they’d just have to honor the contracts that we are
all bound to already. With all that in
mind, I implore Governor Cuomo to sign S2849A, to prohibit mid-year formulary
changes.
*Newman, Daniel et al. “Prevalence
of multiple chronic conditions in New York State, 2011–2016” PLOS One, 7 February 2019, https://doi.org/10.1371/journal.pone.0211965.
Accessed 1 October 2019.
