Monday, October 2, 2017

Rare diseases and the U.S. commitment to life

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.

Reflections From an Insider on Charlie Gard and Socialized Medicine

Obamacare left many victims in its wake; then the GOP’s failure to float an alternative compounded the frustration. The result: A push for an American single-payer system is gathering momentum. When congress reconvenes next month, Senator Bernie Sanders is expected to introduce his “Medicare for All” bill, co-sponsored by Sen. Kamala Harris (D-CA) and polls suggest Americans, worn out by the health care wars, are growing more receptive to the concept.
But the awful story of baby Charlie Gard who was prevented from obtaining experimental treatment in the US by the British government, shines a spotlight on the failure of government rationed health care. It’s a failure that touched me all too personally. 
Five years ago my 18-month-old son Arturito was hospitalized for symptoms that at first looked like a severe cold. Then my wife Olga and I were given the shocking news: Arturito had mitochondrial depletion syndrome, a very rare condition for which no cure is known. “Take Arturito home now,” the doctors told us. “At least he can die a comfortable death at home.”
I couldn't accept this. I called pediatricians all over the country until I happened upon Dr. Michio Hirano, a professor of neurology at Columbia University Medical Center who was doing a clinical research study on treatments for this disease. Dr. Hirano has dedicated years to cutting-edge experimental work on the treatment of rare neuromuscular diseases and his treatments have been breaking barriers in the field of rare genetic muscular disorders. 
My son was fortunate enough to undergo this treatment — called nucleoside therapy — and today he is one of 16 children with the disease who have made significant progress. On Dr. Hirano’s regimen Arturito’s respiratory function and strength have improved noticeably. He can now move his fingers, hands, and toes, and sit (with support) at a 90 degree angle for 90 minutes compared to a 45 degree angle for 15 minutes previously. Most importantly, five years after we were told to prepare for his “comfortable death,” my son is alive.
I have since joined Dr. Hirano, who is also father of two young girls, and become an advocate for this protocol.
My role as an advocate for MDS children brought me to the Great Ormond Street Hospital (GOSH) in London and to the bedside of another baby with a similar strain of MDS, 11-month-old Charlie Gard. I visited with Charlie’s parents and I shared word of my son’s improvements with Dr. Hirano,
Connie Yates, Charlie’s Mom, feared the British system. She wanted to bring Charlie to America to be treated by Dr. Hirano. She even raised funds for a flight to the U.S. with contributions from over 83,096 individuals and entities.
The doctors were unmoved — fixed in their belief that Gard should, as they put it, “die with dignity.” GOSH followed their pre-determined government regulations, and when Charlie’s parents petitioned to take Charlie to the United States, the hospital took Charlie’s case to court because in the U.K., the judicial system handles these rare and complicated medical cases. The hospital can request the power to remove life support. And this is precisely what happened to Charlie. His doctors fought for him to “die with dignity” instead of fighting for him to live. To further complicate the matter, the court appointed an attorney for Charlie, an attorney who also represented an organization called “Compassion in Dying,” a close relative of the "Dignity in Dying" organization which, as the Daily Telegraph describes it "campaigns for a change in the law to make assisted dying legal in the UK."
Americans have been shocked by the Charlie Gard case. For all our health care system’s faults, it does not interfere with personal decisions on this level. Americans are allowed to help their children fight for a chance at life. In the U.K., by contrast, the state had veto power.
Americans who say they would welcome a “single-payer” system should consider the Gard case. It’s a clear example of the workings of socialized medicine. Currently the health-care system in the U.K. safeguards hospitals’ bottom line, rather than focusing on a patient’s medical plan. Hospital expenditures are carefully monitored by government. Charlie’s hospital in London reported Charlie’s life prognosis based on antiquated technology. In July, for example, an American expert (whose name has not been published for legal reasons) testified before the High Court about new clinical data on the benefits of nucleoside therapy that had not been available when he testified before them in April. Meanwhile, GOSH has steadfastly maintained that Charlie Gard's brain damage was more severe than children in Hirano’s clinical trials and thus that Hirano’s data did not apply.
Under socialized medicine, American medical services would be solely administered by government. Funding for these services would come from philanthropy, or worse, taxation. The imposition of taxes will create a government bidding system for medical services and supplies, increasing costs. The existing relationships between doctors and patients would shift, as well, and reporting requirements for specialized treatments would disrupt individual privacy.
We are already getting a taste of this through the detestable Obamacare feature of Independent Payment Advisory Board (IPAB), better known as the so-called “death panel.” IPAB makes health-care payment decisions independent of patients and their doctors. This board is independent of hospitals, Medicare, Congress, the judiciary system, the democratic process, and, ultimately, the Constitution. This board 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, they micromanage our health care with rules outside of our control.
If my son were a British citizen, we wouldn’t have had the choice to try the experimental medications which have saved his life.
We must come together as a nation to improve our health-care system and share the benefits it creates for humanity. If we move towards even more of the centralized rationing that characterizes socialist care, we will not be able to do so.
In death, Charlie teaches us that states should pursue patient-centered, market-based reforms. We need a market-based competitive health-care system to sustain reasonable and affordable plans for everyone regardless of their illnesses. Governments and courts should respect the privacy and the will of our loved ones.

Building a stronger America: It starts with developing 21st-century infrastructure solutions

The infrastructure in China is impressive. My recent visit extremely impacted my perspective on the overall transportation systems in the United States as I witness that China has a big advantage with their wonderful airports, road systems and with their unique Shanghai Maglev Train. I had the opportunity to ride on the world’s fastest commercial train; it has maintained its record since 2004.
The train can speed up to 268 mph and can quickly travel 19 miles in a short 7.5 minutes. This strategy saves valuable time and achieves results that are more cost effective. We in America must satisfy society and provide transportation methods that reflect the rapid developments of the 21st century. Time is of the essence and we know that fast turnaround ultimately closes the deal efficiently and effectively. It was instructive to experience firsthand how a quicker transportation system adds a lot of value to commerce — and for traveling passengers as well. We need an innovative system to compete with other leading countries around the world.
Private and public partnerships in transportation are key components for government to obtain effective results. Partnerships will create leverage for private sector entities to financially develop our economy by integrating resources and also creating jobs. The overall improvement of the U.S. infrastructure, particularly state and local transit, can be made possible by partnering with public entities such as non-profits to implement immediate results.
A source of revenue such as tolls or other public revenue is required to pay back private investments, and the outcomes are likely to be extremely rewarding. Our global economy thrives on time-saving innovations. The quicker transport of goods inevitably leads to increased productivity. By initiating and implementing new structures in transportation a significant value would be added to our nation’s infrastructure.
Private and public partnerships share a vision to regain our global leadership in transportation such as the one we had in aviation for so long. The country at large needs better trains and roadway systems. We must also effectively secure our bridges to help transport people and products in a timely fashion.
Intrastate commerce will also increase with an improved infrastructure system. Our leaders should support President Trump’s infrastructure plans for economic development with American labor, energy, iron and steel industries. Nurturing existing private and public partnerships as well as establishing new partnerships is fundamental. Funding is being allocated to complete current projects and to begin future projects on much needed improved roads, bridges, tunnels, highways and airports.
Meanwhile, the Trump administration is working on accounting for federal taxpayer dollars to ensure the progress of infrastructure projects. Prioritizing local and state needs is a pressing concern now since there are multiple action items lined up to address the nation’s infrastructure problems. Last night, at a dinner with Mr. Trump and a group of bipartisan U. S. senators including Sen. Joe Manchin, West Virginia Democrat. Mr. Manchin has publicly pressed for U.S. infrastructure buildup and was front and center in their discussion.
Mr. Trump is working in a proactive way to address many of his priorities, and infrastructure buildup must be a bipartisan effort as it is a winning issue for America, not simply a Republican or Democratic initiative.
As Mr. Trump recently stated, new building projects inspire Americans, and introducing new technology to our daily transportation needs will elevate our global standing into the 21st century. The Chinese are grateful for their commercial train system, and soon we will be able to compete with their efficiency. At the same time, producing new projects would create jobs and wealth in the U.S. The president and Congress must come together to address the urgency of prioritizing and executing actions immediately. I am certain our global economy will flourish significantly once we are able to transport passengers and goods efficiently throughout the entire nation.

When rebuilding Puerto Rico, let's start with its economy

When it rains it pours. It seems these days, Puerto Rico can't catch a break. 
As the people of the island work to recover from a double whammy of devastating storms, we must, as a nation, take a closer look at assisting our fellow American citizens through economic development and disaster relief for Puerto Rico.
Already in a perilous economic situation, Puerto Rico now must grapple with the urgent matters such as roadway cleanup and hooking people back up to clean, running water and the electrical grid. 
As Congress works on emergency appropriations legislation for those affected by Hurricanes Harvey, Irma and Maria in Texas, Florida and the U.S. territories of Puerto Rico and the Virgin Islands, two key members of Congress can play a vital role in our rebuilding efforts. Both are Florida Republicans. The first is Sen. Marco Rubio who serves a large number of Puerto Ricans living in his home state of Florida and is a member of the Senate Appropriations Committee. The second is Rep. Mario Diaz-Balart of Miami, a longtime advocate for Puerto Rico and a member of the House Appropriations Committee. Their leadership in Congress to help Floridians and Puerto Ricans rebuild from these horrible hurricanes is crucial.
Another good example of proactive efforts that are currently taking place in Congress to help Puerto Rico is that of Resident Commissioner Jennifer Gonzalez-Colon who introduced a bill to amend Title 49 referencing air cargo on the Island. The “Puerto Rico Air Cargo Industry Empowerment Act,” or HR 3472. This bill is introduced in connection to an economic growth strategy modifying the federal laws that currently governs cargo transported in any aircraft on the island of Puerto Rico. Given their current economic situation, passing laws like this one will provides necessary changes to integrate shifts that can benefit the development and growth of the island.
While strategizing options for development of the economy in Puerto Rico, we must take into consideration that the household income of 3.4 million Puerto Rican citizens reflects nearly $20,000 per year. By contrast, on the mainland, Mississippi has the lowest income per capita and the household income is nearly $40,000 per year with a similar population of almost 3 million citizens. There is a significant gap to fill in transitioning Puerto Rico out of a third world country status and out of their $72 billion debt.
There are several important and viable industries in Puerto Rico that help the economy greatly. Tourism is one of the most predominate sources of income, in which their economy is highly dependent on thanks to their beautiful beaches and sunshine. The other one is manufacturing which produces 49 percent of employment on the island and most are good paying jobs. However, there is great potential to increase those primary industries on the island to others, such as: aviation, international banking, international finance, medical tourism, fashion and arts, transportation infrastructure, energy and information technology just to name a few sectors.
For sustainable economic growth, investors in Puerto Rico should maintain a long-term perspective and create business opportunities that will address the ongoing need for economic growth and development. Legislative efforts including changes to Title 49 will help. This sets in motion the upward domino effect for increased employment and higher wages ultimately increasing the household income and the overall economy on the island. The implementation of the new industries and needed reforms in established sectors such as energy, are essential to improve the economy where tourism, manufacturing and other promising sectors can flourish for the residents of Puerto Rico and all Americans. 
Art Estopinan is part of the New World Group, which represents the Coalition of the Private Sector in Puerto Rico. Estopinan is a contributor to the American Project with the School of Public Policy at Pepperdine University in Malibu, California.