Rare diseases and the U.S. commitment to life

ANALYSIS/OPINION:

Socialized medicine would bring the U.S. a lot closer to total socialism. Doctors, medical service and hospital facilities would be solely administered by government, state agencies or other organized groups. Funding would be obtained by philanthropists, assessments or even worse — taxation. Imposed government taxes would create a government bidding system for medical services and supplies — increasing costs.

The existing relationships between doctors and patients would shift and the logistical requirements for specialized treatments would also disrupt privacy. The review approving medical attention for the “problems of the sick” would become public instead of honoring the decisions of immediate family.

The Independent Payment Advisory Board (IPAB) provision under Obamacare is completely independent to you and your doctors; the physician who knows your case, evaluates, diagnoses and treats you for your medical conditions. This board is independent to your hospital and Medicare — also independent of Congress, the judiciary, the democratic process, ultimately even the Constitution.

It consists of 15 unelected bureaucrats confirmed by the Senate. IPAB submits recommendations to Congress to prevent a high growth of national health care expenditures — essentially micromanaging our health care into rules outside our control.

There are many who strongly reject the “Death Panel” such as the American Medical Association. Many do not agree with the board’s authority and inflexible mandate to impose arbitrary across-the-board cuts to physicians and other providers.

Shifting this dynamic could adversely affect access to health care services for those with rare diseases and Medicare patients as well. Many potential consumers do not attend their regular visits, making matters worse, conditions become acute and more expensive to treat. The working class should choose their health insurance based on their needs in a free market with competition for affordable health care benefits for themselves and their children.

We can see a clear example of socialized medicine given the current health system in the United Kingdom with the case of Charlie Gard. Charlie had a disease called Mitochondrial DNA Depletion Syndrome which affects cells that provide energy to muscles, kidneys and the brain. His muscles began to become weak rather quickly, yet he was never brain dead.

Great Ormond Street Hospital had the power to take Charlie’s parents to court and request permission to remove the machines and technology necessary to keep Charlie alive. His parents researched and found hope with seven different experts. One of those experts is Dr. Micho Hirano from Columbia University Medical Center (CUMC) in New York City. Dr. Hirano is a clinical expert of neuromuscular rare diseases; he is also the doctor who treats my son “Arturito.”

Arturito is one of 16 patients in the world who are currently being treated for a similar muscular depletion with experimental medication. After administering these experimental medications for my son for nearly four years, and tracking numerous milestones of improvements I am extremely grateful for the opportunity of this treatment.

As a parent advocate with major strides of progress, I visited Charlie Gard’s family in London with my testament and encouraged them to believe in the opportunity and possibility of a cure provided by Dr. Hirano. In the U.S., despite the statistics and potential negative predictions, the health care system does not interfere with my personal decisions and respect our family’s privacy: I am always entitled to pursue my parental rights and so are the other 15 parent who choose to give their child a chance of life.

Charlie’s parents, Connie Yates and Chris Gard, conducted extensive fundraising efforts and have received contributions from over 83,096 individuals/entities to help fund their wish to try experimental medication to save Charlie’s life. They took matters into their own hands with their GoFundMe page, created a website plus extensive advocating on social media to overcome the challenges caused by the limited funding accessible from their socialized medical system.

This system (equivalent to our IPAB) removed parental rights, forbidding these parents their own child’s best interest. Take a moment to interpret these emotions as a parent to a young child — or — toward your elderly parents.

On July 28, 2017 — just one week before his first birthday — Charlie Gard passed away due to the lack of the experimental medications which could have saved his life. States should pursue patient-centered, market based reforms that get health care back on track. We need a market-based competitive health care system to sustain reasonable and affordable plans for everyone regardless of their illnesses. We must respect the privacy and the will of loved-ones.

Essentially, from this example, we understand that rare diseases don’t get enough funding for research — but why should that be a reason for a child to die? We’re the United States of America — and here the power of choice is freedom.