I live and die by the mantra that patients should have a seat at the table whether that be at the bedside, within the biotech and digital health industries or on Capitol Hill...the patient’s voice is essential.
I fear the patient’s voice has been excluded from a critical policy change in the Massachusetts 1115 waiver. A policy change that could have a devastating impact to the patients on MassHealth. How can I be so sure? Well, I am a patient.
Six years ago, at the ripe age of 19, I received back-to-back diagnoses of serious, chronic autoimmune diseases. The psoriatic arthritis diagnosis resulted in total body, paralyzing joint pain that made even the slightest movement excruciating. The Crohn’s disease left me with bleeding ulcers in my small intestine that made even drinking water unbearable.
I endured countless failed treatments, debilitating fatigue, strained relationships and more pain than I could have ever imagined. But I am now blessed to have just celebrated four years of medically controlled remission because of the life-saving therapy I receive every two months — therapy that treats the symptoms of both my autoimmune diseases. I now live a relatively “normal” life and I couldn’t be more thankful.
Therefore I speak with experience when I say that there is a policy change within the Massachusetts 1115 waiver that has erupted grave concern among patients and advocacy organizations across the state. The change seeks to impose a closed formulary and offer only a single drug per therapeutic class in Massachusetts’ medicaid program. This is extremely dangerous for patients living with anything from an autoimmune disease to cancer to a mental health condition...and my journey as a patient illuminates why.
While there are several medications on the market approved to treat my autoimmune diseases and within the same therapeutic class, I’ve only found one medication that works for me. This is not uncommon.
There’s a reason precision medicine is all the rage in healthcare, it’s because no one person is the same. I failed on the other medications in my therapeutic class. And failing my medication means I’m bedridden, unable to move, in unbearable pain and quite frankly have a life that isn’t worth living. With my medication that works, I am a vibrant, productive member of of my community working a full time job and living life the the fullest.
Denying patients access to a medication that works is inhumane. And the real kicker in all of this is that it won’t save the Commonwealth money. In fact, it has the potential to increase costs. A patient without the right medication is a patient who spends more time in the ER. A patient without the right medication is one that has a doctor’s appointment every day of the week. A patient without the right medication can’t keep a job because they live pain 24/7. A patient without the right medication can’t live a full life.
I can’t imagine patients were at the table when this waiver was drafted but as an advocate I will ensure my voice is heard on behalf of my community. I urge policymakers to go back to the drawing board to revise this provision...this time with patients included.
Patients’ lives are at stake, please don’t let us down.
Want to take action? Write opposition to the Governor, members of Congress and State Legislators and/or submit an op-ed to your local newspaper and post on social media!