Health

Not Everyone Wants the Cures That the Cures Act is After

Palestinian-American actor and comedian Maysoon Zayid, who's had Cerebral Palsy since birth, gives her take on the new legislation.
January 25, 2017, 3:47pm
Image: Ani Dimi / Stocksy

On December 13th, 2016, President Barack Obama signed the $6.3 billion 21st Century Cures Act—an early Christmas gift of sorts to his presidential wingman and everybody's favorite VP, Joe Biden. The heart and soul of the bill is the Beau Biden Cancer Moonshot, a promise of $1.8 billion which will be used to accelerate cancer research. It also allots a much needed $1 billion to combat the deadly opioid addiction sweeping America. Another portion of the bill is dedicated to mental health care. Insurance companies will be further encouraged to treat mental health the same way they would any other medical issue, assuming We the People still have health insurance in the future. There is even a section of the bill that provides funding for people like me. I have Cerebral Palsy (CP) which, in my case, was caused by a traumatic brain injury. When I was born, the doctor who delivered me nearly suffocated me. That loss of oxygen caused my CP. The BRAIN initiative (a part of the Cures Act) supports research on ways to treat, cure, and prevent brain disorders. I am thrilled to see this bill signed. I would much rather have my tax dollars spent on research to stop cancer and save lives than to be spent on military initiatives that take lives. To cure, or not to cure, that is the question. There is a misperception in the non-disabled world that disabled people's dream is to be cured altogether. Disability is not a monolith, so I am sure that there are some disabled folk who go to bed every night praying they wake up cured and are disappointed when they do not. I am not one of these people. I don't dream of being cured in a hospital. I dream of starring on General Hospital.

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Ever since the doctor who delivered me almost killed me on my birthday, I have shunned mainstream medicine. I prefer natural remedies to poisonous prescriptions and elective surgery is definitely not for me. I do, however, respect the fact that many in my community depend on these treatments to improve their quality of life and in some cases, for their survival.

While many rightfully cheered the signing of the Cures Act, it's not devoid of controversy. Michael Bachhuber, chairperson of the National Council on Independent Living's Mental Health Subcommittee is not a fan of the act. "NCIL opposed the bill for a number of reasons, including some of the mental health provisions that threaten the privacy of people with psychiatric disability and promote institutional and involuntary treatment over community-based and voluntary treatments," he says.

The fast tracking of FDA drug approval is a concern for many disabled advocates I've recently spoken to. Bachhuber elaborates, "We know that many drugs reduce the quality of life for people who take them. We see that frequently in mental health. We also see substantial evidence that long-term use of many drugs leads to increased disability and early death. Now is the time for more regulation of the industry, not reduced protection."

Kathleen Flaherty, executive director for Connecticut Legal Rights Project, like me, applauds the effort but is worried that if the Affordable Care Act is repealed, the treatment will be inaccessible to Americans who can't afford it. "The provisions regarding mental health parity will be critical in enforcing the rights of individuals with insurance coverage to access treatment and have it paid for by insurance," she says. "However, the very real possibility of repeal and replacement of the ACA will clearly affect how many people have insurance coverage, and any language regarding enforcement is only as good as an executive branch willing to enforce the law."  She's also concerned about fast-tracking of drug approvals and worried about the overemphasis of medication as the primary solution.

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I have personally chosen not to treat my CP with prescription medication, but I have also seen powerful drugs save my sister's life when she beat brain cancer. Ads on TV for these medications already list terrifying side effects. Would making experimental treatments available sooner rather than later truly do more harm than good?

My mother, Ribhia Ali, who recently retired from her position as director of the medical lab at Jersey City Medical Center believes the Beau Biden Moonshot can save lives. "Many cancer patients simply don't have the time to wait," she says, "These experimental treatments and drugs are their last chance, so why not make them available?" The benefits of the act have not gone unnoticed but there is a genuine fear in the disability community that the bill will do more harm than help. "The Cures Act is Congress's gift to pharmaceutical companies," says Janine Bertram, president of the Disability Rights Center in Seattle, "It seriously abridges the rights of Americans with disabilities."

Senator Elizabeth Warren also voiced her concern that the bill is far too pharma-friendly, "I cannot vote for this bill. I will fight it because I know the difference between compromise and extortion."

Like Joe Biden, this bill is noble. I am a huge advocate of research. Knowledge is power, but I'd also like to see funding for survival. I dream of a far more accessible world where those of us who can't be cured can function equally to our non-disabled peers. I want insurance companies to cover alternative treatments instead of focusing solely on the medical model.

Our hard-earned tax dollars should also be used to enforce the Americans with Disabilities Act (ADA), fight for equal pay for disabled workers, impose stricter sentences on those who commit violence against the disabled, and remove the barriers blocking disabled couples from marriage equality.

Unfortunately, even if these miracle cures become a reality, they will most likely be inaccessible to the very people whose lives they could change. The US Senate voted in the middle of the night on January 12th, 2017 to repeal the Affordable Care Act and abolish any protections for people like me with preexisting conditions. On Friday the 13th, the horror continued when the House of Representatives also voted to repeal the ACA with no replacement in sight. Joe Biden's dream has finally come true but if millions of Americans are denied insurance and access to life-saving treatments, it will be a national nightmare too.