Meet Max

21st Century Cures Will Provide Hope for Patients Across the Country

Max joined me and my #Cures2015 partner Rep. Diana DeGette of Colorado after the historic House vote to thank us.

When six-year-old Max Schill was born, his mother, Lisa, noticed that her son’s eyes seemed spaced a little wider than normal, and that his ears also appeared to be set lower than average. Max was quickly taken to the neonatal intensive care unit where doctors discovered that he had low oxygen levels, pulmonary valve stenosis, atrial septal defects, failure to thrive, reflux, qualitative platelet defect, chiari malformation of the brain, and a tethered spinal cord.

But he was a fighter. And after a year and a half, Max was diagnosed with a Rasopathy called Noonan Syndrome, a rare genetic condition that prevents normal development in various parts of the body.


Of the 30 million rare disease patients in America, it is estimated that 50 percent are children, which means our nation’s youth are bearing the burden of incurable diseases.

There are 10,000 known diseases in the world, of which 7,000 are rare, and only 500 have effective treatments or cures.

The cost of developing a new drug has doubled since the early 1980s. While medical innovation has boomed, the process for approving new treatments, cures, and devices has remained stagnant, unintentionally slowing those products’ ability to help ailing patients.

The health, societal, and economic impacts of these diseases are undeniable and show an absolute need to modernize the process. This is why the House of Representatives passed H.R. 6, the 21st Century Cures Act, on July 10, by an overwhelming bipartisan vote of 344–77.

If you haven’t heard by now, the 21st Century Cures Act is a bill that, when it becomes law, will provide nearly $9 billion in funding for the National Institutes of Health and more than $500 million to the Food and Drug Administration in order to support researchers, doctors, and patients in combating disease in America. This investment in science and technology will also help streamline the process of clinical trials so that patients like Max, who are in dire need of treatments, can regain hope and aspire to a full and healthy life.

Illness and disease impact far more than just a patient’s body — these types of diseases have significant impacts on the patient’s mind, their caregiver’s health, and the country’s economy.

A study published in 2013 by clinical trial research firm Shire found that 75 percent of patients suffering from a rare disease also suffer from depression and 65 percent of those patients feel isolated due to their ailment. Similarly, three out of every four caregivers who provide support for those patients suffer from depression symptoms.

The same study also found that it takes an average of seven years for an accurate diagnosis of a rare disease after an average of three misdiagnoses.

In addition to the human toll, disease saps productivity from on our economy. Alzheimer’s alone costs government, families, and businesses a total of $300 billion a year while chronic diseases such as cancer, heart disease, and pulmonary conditions cost the U.S. economy more than $1 trillion annually.

These statistics will only continue to grow without action.

The 21st Century Cures Act is the reform we need. It encourages a patient perspective in new drug research and will speed up the process for new treatments to reach the market, which currently takes upwards of 15 years.

More than 700 patient and medical organizations have signaled support for the 21st Century Cures Act because they know this bill will have a profound impact on millions of patients, doctors, and our entire country.

Best of all, for patients like Max, #Cures2015 provides hope. This nonpartisan effort is Congress at its best.

Learn more about 21st Century Cures here.

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