11:38 AM EDT

Lois Capps, D-CA 23rd

Mrs. CAPPS. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and include extraneous material on the resolution under consideration.

11:39 AM EDT

Lois Capps, D-CA 23rd

Mrs. CAPPS. Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise in strong support of House Concurrent Resolution 299, a resolution expressing support for the goals and ideals of National Cystic Fibrosis Awareness Month. I would like to commend my colleagues on the Energy and Commerce Committee, Representatives Ed Markey and Cliff Stearns, for their diligent work in bringing this resolution before us today.

Cystic fibrosis is a life-threatening, in fact it is a fatal genetic disorder, that currently afflicts over 30,000 Americans, with 1,000 new cases diagnosed each year. The disease affects the respiratory and digestive systems, causing serious health problems in organs such as the lungs, intestines, and the pancreas. Cystic fibrosis has no cure, and although treatment has been greatly improved, the average life expectancy for people with this disease is only 37 years.

With greater awareness of cystic fibrosis, we hope to encourage much more investment and research and treatment into this disease. That is why I am proud to cosponsor House Concurrent Resolution 299 which encourages Congress to support the National Cystic Fibrosis Awareness Month.

The resolution rightly praises the many public-private partnerships which have sprung up in the last few years, and it also stresses the promise of innovative research on cystic fibrosis, and this is the environment that we need today which is critical to finding a cure for this fatal disease.

I urge my colleagues to join me in support of House Concurrent Resolution 299.

I reserve the balance of my time.

11:40 AM EDT

Michael C. Burgess M.D., R-TX 26th

Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume, and I rise in support of House Concurrent Resolution 299 that supports the goals and ideals of Cystic Fibrosis Awareness Month.

I thank the sponsor of the resolution, Ed Markey of Massachusetts, and cosponsor, Cliff Stearns of Florida, for their diligent work on this issue. And I would like to thank my colleague on the Energy and Commerce Committee, the gentlelady from California, for presenting the bill before us today.

H. Con. Res. 299 raises public awareness by observing Cystic Fibrosis Awareness Month and recognizing the 30,000 people in the United States that have this hereditary disease. Cystic fibrosis affects the lungs, it affects virtually every system in the body, and certainly complications can arise such as life-threatening lung infections, and gastrointestinal complications that lead to malabsorption. Of the 30,000 Americans affected by this inherited and chronic condition, more than half are children.

Mr. Speaker, significantly, in the 1950s, very few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended the life of children, and now even adults with cystic fibrosis. In 2006, the predicted median age of survival had risen to 37 years, and many people with the condition can now expect to live into their 40s and beyond, a significant achievement.

When I began my medical studies back in the mid-1970s, cystic fibrosis was, indeed, a disease of childhood. And now we have many more people living well into young adulthood with the condition. And the expectation is with further advances in research, this age will greatly increase in the next several years.

It is important that we recognize Cystic Fibrosis Awareness Month and educate the public about the symptoms of the disease, increase the knowledge and understanding of the condition, and promote early detection for the new cases that are diagnosed each year. And the bill makes reference to 3,500 children that are born each year with cystic fibrosis.

I thank the Cystic Fibrosis Foundation for their efforts and continued funding of research and potential therapies. One of the intriguing things about treatments on the horizon, certainly we are all aware of changes that are going on in genome research and the fact that there may be new therapies that none of us dreamed of a few years ago. Compacted nanoparticles of aerosolized DNA taken as a nasal inhalant have made some dramatic changes in this disease, and certainly we look forward to many

more advances on these fronts.

Certainly the hard work of the foundation has improved the life of the 70,000 people worldwide suffering from cystic fibrosis. And hopefully one day they will lead the way in finding a cure.

Mr. Speaker, I urge my colleagues to support this worthwhile resolution.

Mr. Speaker, I reserve the balance of my time.

11:43 AM EDT

Michael C. Burgess M.D., R-TX 26th

Mr. BURGESS. Mr. Speaker, I have additional speakers on the way, and while awaiting their arrival, let me just also mention that this bill, coming as it did through our Committee on Energy and Commerce, for major pieces of health care legislation, that is the correct approach, for it to come through the committee process, committee hearings and subcommittee and committee markups.

Later on today we will have an opportunity to vote on a Presidential veto of the Medicare bill that we passed on this House floor a few weeks ago.

[Time: 11:45]

That bill was an example of not following regular procedure, and that is what has made this issue that has embraced the correction of the physician reimbursement cuts--embraced by both sides of the aisle, but it has made it very contentious for this body. It was all unnecessary. Not a person in this body really opposed correcting the physician cuts.

Really the only issue was the approach. We could have had an opportunity to have a bill marked up in our subcommittee or in our full committee. I would have welcomed the opportunity to propose amendments, to perhaps perfect that legislation that would have rendered the whole process of this very contentious standoff we have now with the White House, would have rendered that absolutely unnecessary.

There are good ideas up there on both sides of the aisle. I would again use this opportunity to express how important it is that this House follow regular procedure, particularly on these major health care bills. This bill that the President will veto today, that we will have an opportunity to vote on the override, this will affect the delivery of health care for the next 30 or 40 years in ways that many of us have no ability to comprehend right now.

It's unfortunate, because we had the opportunity to do the markups in subcommittee and full committee, and, for whatever reason, the decision was made to bring it up on suspension, push it to the last minute, so there really was no opportunity to say, well, let's take it back and go through committee, because we were up against a hard deadline.

Everybody knew that last December. We had passed a 6-month extension. It was one of the most insulting things we could have done to the medical profession in this country was give them a 6-month reprieve on the rollback of the Medicare reimbursement rates.

Instead, we gave them a 6-month reprieve, and we pushed it up to the very last minute, so there was no other option. It's an up or down vote. Take it or leave it. You have got this bill. It has got a lot of other things appended to it.

We heard no discussion about the unfunded mandates for e-prescribing that were tagged onto this bill. I doubt many of the regular physicians out there in practice today really understand what we have passed for them, what we have layered on to their overhead that grows by leaps and bounds every year. It's the additional regulations that have been placed on physician practices.

This is an example today of doing things the right way. Later on this afternoon we will have an example of doing things the wrong way. I would urge the leadership of this House to pay attention to this.

We have good individuals on both sides of the aisle that have are serving in our committees of jurisdiction. Let's not circumvent that committee process and bring things up on the suspension calendar that really are substantial changes in Federal policy that really should go through regular order.

Mr. Speaker, I reserve the balance of my time.

11:47 AM EDT

Michael C. Burgess M.D., R-TX 26th

Mr. BURGESS. Mr. Speaker, well, again, we do have other speakers who are reportedly on the way.

Let me just add another couple of comments, because I have heard some discussion that we will have another opportunity to vote on SCHIP legislation before this House comes to a conclusion.

This, again, would be a mistake to bring it up through the suspension process. We have until March of 2009 to reauthorize the SCHIP, the State Children's Health Insurance Program.

I would urge this House to take up the work of that now. Let's begin in our committee this year. We actually don't have to do the bill until next year. We can do a lot of the groundwork this year, and that would be the correct way to approach that.

Mr. Speaker, I reserve the balance of my time.

11:48 AM EDT

Edward J. Markey, D-MA 7th

Mr. MARKEY. I thank the gentlelady, and let me begin by expressing my appreciation to Chairman Dingell, Ranking Member Barton, Mr. Pallone and Mr. Deal for their support of this important resolution, but I would also like to extend my special thanks to my friend and cofounder of the Congressional Cystic Fibrosis Caucus, Cliff Stearns of Florida. Thank you, Cliff, for your commitment to this issue.

The resolution before us today is intended to highlight the importance of beating this dreadful, cruel disease, and bring hope to people with cystic fibrosis and their loved ones. Approximately 30,000 children and adults in the United States have cystic fibrosis, a life-threatening genetic lung disease for which there is no cure.

In my home State of Massachusetts, 800 families are affected by this horrible disease. That's a lot of moms that wake up at 5 in the morning so that they can pound on their child's chest to clear the abnormally thick, sticky mucus that makes breathing difficult. That's a lot of children who cough and wheeze and are at constant risk for life-threatening lung infections. That's a lot of dads who want their child to have a healthy life but have to worry about the unpleasant alternative of a shortened

life expectancy marked by frequent admissions to the hospital.

This resolution is about supporting these families and providing them with the hope for a better future. Significant improvements have been made in the treatment of cystic fibrosis. Fifty years ago many children with CF did not live past 10 years of age. Today, the life expectancy is 37 years.

Many of those achievements are due to the hard work and dedication of the Cystic Fibrosis Foundation. Yet we still have a long way to go to provide people with CF with a normal and a 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 their caretakers. The cystic fibrosis community has ensured that we understand the unique challenges that

face people.

11:51 AM EDT

Cliff Stearns, R-FL 6th

Mr. STEARNS. Mr. Speaker, I stand before my colleagues on the House floor today to lend my strong support to this House Concurrent Resolution 299, Supporting the Goals and Ideals of National Cystic Fibrosis Awareness Month.

I am also honored to cochair this with my distinguished colleague from Massachusetts, Mr. Ed Markey, and I look forward to passage of this resolution. He and I have worked on this together. We are very pleased that, finally, it's coming to the floor, and hopefully will pass today.

My colleagues, this is a disease that affects 30,000 Americans living in this country, more than half of which are children. One out of every 3,500 babies born in the U.S. today has cystic fibrosis, with 70 percent of the cases diagnosed by age 2 and 1,000 new cases diagnosed each year.

In my home State of Florida, there are roughly 1,100 patients who suffer each and every day from this debilitating disease. It's cruel. That is 1,100 too many. These CF patients have to endure hours of treatment each day just to stay relatively healthy and maintain normal lung functions. Treatments range from daily air clearance techniques to intensive nutrition and drug therapies, and even to lung transplants in the most severe cases.

People suffering from CF have two copies of a defective gene, which causes the body to produce abnormally thick sticky mucus which clogs the lungs [Page: H6496]

and can result in fatal lung infections. This kind of mucus can also obstruct the pancreas, making it difficult for people with CF to absorb nutrients, simple nutrients, in food. Unfortunately, more than 10 million Americans are unknowingly symptom-free carriers of the CF gene.

Now, the residents of Florida have recognized there is a real need for CF care and research. There are 15 specialized centers and clinics for cystic fibrosis care in my home State of Florida, including one at the University of Florida, which I represent here in Congress.

My colleagues, there is no cure for CF, even though it is one of the most common, life-threatening diseases in the United States. Now, 50 years ago, CF was considered a death sentence, as there were no drugs to combat and control the symptoms.

In 1955, a child born with CF was not expected to live long enough to attend elementary school. Today, the median age of survival for a CF patient is 37.

I am proud to say there are five drugs on the market, and there's over 30 new drugs that are in various stages of development. These drugs are helping children born with CF to live significantly longer and healthier lives. People with CF are living longer. Over 40 percent of the CF population is now age 18 or older.

But that is not enough, my colleagues. We need more research and more funding, and we can't stop until we find the cure. I believe in the ingenuity and strong ethic of the American people. I believe we have the brain power and the drive to cure this disease today.

I would like to recognize the Cystic Fibrosis Foundation, which has led the development of these promising treatments through an innovative business approach to drug discovery and development. The Cystic Fibrosis Foundation has entered into partnerships with biotechnology and pharmaceutical companies in an effort to find a cure, a simple cure for this disease.

As a result of their efforts, promising potential drug therapies to correct the cause of the disease are now entering clinical trials in CF patients, and new therapies that treat the symptoms of this disease are now helping patients every day as we speak.

In the past 5 years, the Cystic Fibrosis Foundation and its subsidiaries have invested over $650 million in drug research. I commend them for their commitment to innovation and for acting as a facilitator in the development of these important new drugs.

With the support of the foundation, programs like the one at the University of Florida CF and Pediatric Pulmonary Disease Center are simply improving the health outcome of patients who have cystic fibrosis. In the past 5 years in the State of Florida, CF research and care supported by the CF Foundation has totaled $3 1/2 million.

I urge my colleagues to recognize the achievements of organizations like the Cystic Fibrosis Foundation, and to bring awareness to and honor to the thousands of Americans suffering from CF every day, by simply passing this resolution.