May 16, 2006 - Markey remarks at 2nd Annual Cystic Fibrosis Awareness Day at the MA. State House

BOSTON, MA. - Rep. Markey delivered the following remarks:

"Thank you Representative Coughlin for inviting me to speak here today.  More importantly, thank you for hosting this event for the second straight year to raise awareness about the effects Cystic Fibrosis has on so many young people and their families.  Enough can’t be said for all you and your family have done for the Foundation on both the Chapter and National level. 

As you may know, approximately 30,000 people in the United States have Cystic Fibrosis and more than half of them are children.  One of every 3,500 babies born in the United States is born with CF and more than 10 million Americans are unknowing, symptomless carriers of the cystic fibrosis gene.  But CF affects far more than 30,000 people. It affects all of the families and loved ones of people struggling with this horrible disease.  This makes it vital to raise awareness about CF so that we can support these families and provide them with hope for a better future.

This is one of the reasons why this past March, I asked my colleague in the House, Representative Cliff Stearns of Florida to join me in co-founding the Congressional Cystic Fibrosis Caucus and I am proud to say that in just over a month, 22 Members of Congress have already signed up. 

The mission of the bipartisan Caucus is to encourage Congressional stewardship, to find a cure or control for one of the most common and life-threatening genetic diseases by:
• Increasing awareness of CF and educating Congress and the public about the disease; 
• Improving the quality of life for people with CF;
• Supporting CF research funding through the National Institutes of Health (NIH);
• Encouraging collaboration between the public sector and private research organizations, including the CF Foundation and the biopharmaceutical industry;
• Advocating for earlier diagnosis through state-based newborn screening; and
• And promoting public policies that address the research and health care needs of the CF community, including access to quality health care.

Over recent years, significant improvements have been made in the treatment of cystic fibrosis.  The scientific community has made great strides especially with regard to life expectancy.  Many of these achievements are due to the hard work and dedication of the Cystic Fibrosis Foundation or CFF. But for me, I think CFF really stands for something else as well – CFF is also Courageous Fighting Friends.

Yet, even with the incredible work of our Courageous Fighting Friends, we still have a long way to go to provide people with CF with a normal and healthy life. It is time for Congress to become more involved in the pursuit of a cure. We need to make a greater investment in research and make a stronger commitment to the people with CF, their families and caretakers. 

This is why, like Representative Coughlin, who, at the state level is hosting Cystic Fibrosis Awareness Day here today, I have called on Congress to support a bill I introduced in February to create a National Cystic Fibrosis Awareness Month.

While it is important to raise awareness, it is even more important to provide the funding necessary to cure and control diseases like CF. After all, Research is Medicine’s field of dreams, a field from which we harvest new knowledge about the causes, treatment, and prevention of disease and develop cures.

But scientific advances don't just happen. They are the result of sustained investments in research at the NIH, the Centers for Disease Control, other federal agencies and in the private sector. We must work to ensure that the United States continues to be the leader in biomedical and behavioral research in the 21st century.

It is time to fully support our nation's premier research institution and dramatically increase the funding for NIH.  Last year, NIH suffered its first budget cut in 36 years.  This year, the President proposes cutting it again. Every single Institute at NIH (except NIAID) will be cut and the budget will eliminate 656 research grants. In terms of inflation adjusted, constant dollars, NIH will have lost more than $1.9 billion - or 9.3 percent of its budget - in purchasing power between FY 2003 and FY 2007 under the President's budget.

This is a dramatic blow to the future of scientific research. We must reverse this trend before it is too late. We are just now beginning to reap the benefits of the previous generation's investment in research. We must not shortchange our children's future by starving our research budget-we must ensure that it thrives.

You know, they say that the most powerful four-letter word in the English language is HOPE.   
Hope… that we can raise awareness of the families struggling with CF.
Hope… that we will find better treatments and ultimately a cure.
Hope… that our children will have to turn to the history books to learn what Cystic Fibrosis was.

Thank you again Representative Coughlin for all that you do and to everyone here, remember; this is not a Democrat or Republican issue, it is a Human issue. I hope that you will urge all those who haven’t already to join our Caucus and support my work to help us find a cure for this horrible disease."