Sitting in the examination room at Childrens Dallas, on our bi-annual visit, talking to the neuromuscular specialist about the progression of daughter’s medical condition, Spinal Muscular Atrophy Type II, a progressively degenerative terminal genetic disorder, we went through the checklist which has now become a familiar routine, deterioration of muscle function in the arms and legs, onset of scoliosis, we talk about the need for new orthotics, a bath chair, we discuss the importance and need for continual physical and occupational therapy; we then discuss the availability of a new drug called Spinraza, the first and only medication for SMA, approved by the FDA in January of 2017. This drug, administered via a spinal tap every four months for the duration of one’s life, has been shown to maintain or drastically improve muscle function and may increase life expectancy. Dr.I said it was a no-brainer, we should do it. We agreed.
And then we questioned, would our insurance cover this cost? After all, our insurance company has denied us medical equipment that our daughter’s doctors have deemed crucial and effective, because they do not have said equipment classified under essential benefits or because a general physician does not believe that an SMA patient gains any benefit from use of such specialized medical equipment.
Turns out, our health insurance plan secured via my wife’s employer does cover the drug. Lucky for us! We are enrolled we in the Gold Plan with a higher premium but a lower deductible with minimal out of pocket expenses. Again, that makes us lucky. I wonder if it is only a matter of time before our luck runs out.
In their attempt to repeal the Affordable Care Act, the House and the Senate have put forward the American Health Care Act and the Better Care Rehabilitation Act respectively. It is clear whom the loyalties of our lawmakers lie with; the bills read more like a check to donors and corporations than one that seeks to provide the people of our country access to quality healthcare.
In a particularly cruel spectacle of Robin Hood in reverse the House and the Senate set forth their plan to take from women, the poor, the elderly, the disabled and hand it to the top one percent. In an essentially dollar for dollar transaction they propose reducing Medicaid spending by $772 billion to pay for tax cuts of about $701 billion. Who does this over $700 billion in Medicaid costs cover? It covers 20 percent of all Americans and 40 percent of poor adults that include teachers, farmers, doctors, lawyers, parents and children. As our President said that is ‘mean’.
Now, my family and I are not on Medicaid and do not receive any assistance from the government for our daughter’s disability so at the moment we need not worry if these bills seek to phase out Medicaid because it does not affect us personally. But we will fight, tooth and nail, for those it hurts.
The Republicans though are making sure we have reason to worry too!
The AHCA and BCRA would require all insurance companies to cover people with pre-existing conditions; but then it allows states to apply for a waiver that allows them to effectively lower standards that direct what services must be covered by plans.
By redefining what the ACA classified as Essential Benefits, that included benefits like maternity care and mental health care insurers can create narrower plans that reduce or eliminate these benefits. Insurance companies would also be able to enforce other restrictions, such as waiting periods decide; additionally they would have the power to dictate patient eligibility as they see fit. Spinraza, the drug that my daughter’s doctor sees as an absolute necessity to sustain a certain quality of life that would include the ability to stay in school, pick up everyday items like pencils, books, iPad and such, could be refused to her because it does not cure her and at over a 100,000 per injection, our insurance company would choose not to cover it because they don’t feel quality of life is an Essential Benefit.
Insurers could impose annual and/or lifetime limits on what they spend on patients a particular benefit. If our insurance plan were to have a cap on how much they would allot to medication, I am sure our daughter would not be able to receive multiple injections of the drug Spinraza. This drug that requires lifetime administering to be effective would be out of reach to people like us.
It gets worse, insurance plans could also do away with caps on the annual out-of-pocket costs for patients; which would mean choosing between life changing medication and a home to live in.
To us, our daughter’s condition is complex, ever evolving with new challenges and heartbreak, to our lawmakers, our daughter and kids like her are is a pre-existing condition, a life that we can only allocate a budgeted sum to, case files that doctors and administrators will have to sort through to determine the best candidates for Spinraza; because if the House and the Senate have their way, in a short while from today. Our daughter and others like her will simply be unable to access a wonder drug because enough people in power didn’t think she was worth caring about, they didn’t believe they were worth the price tag. Since each injection costs about a $125,000 and at four times a year for an indefinite amount of time, that is a whole lot of money that our congressmen will have withdrawn from the reserves of the most vulnerable among us and transferred to coffers of the rich and the richer.