John Shimkus

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, I yield such time as he may consume to the gentleman from Oklahoma (Mr. Watkins).

Mr. SHIMKUS. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days within which to revise and extend their remarks on this legislation and to insert extraneous material on the resolution.

Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume. Mr. Speaker, I am pleased that today the House is considering House Resolution 398 introduced by the gentleman from Oklahoma (Mr. Watkins) to recognize the impact of fragile X on thousands of people in the United States and their families. The Committee on Energy and Commerce approved this resolution unanimously last week, and I encourage my colleagues to adopt the resolution today on the floor. Fragile X syndrome is the most common genetically inherited form of mental retardation. Patients diagnosed with fragile X may experience mental impairments that range from mild learning disabilities and hyperactivity to severe mental retardation and autism. While there is no specific treatment for fragile X syndrome, health care professionals have directed their efforts toward training and education so that children with fragile X can reach their maximum potential. The resolution before us today calls on both public and private researchers to enhance their efforts to find a treatment and cure for fragile X. The resolution also commends the work that advocates are doing nationwide to raise awareness about fragile X. I would also like to express my appreciation for the outstanding work that the gentleman from Oklahoma has done to raise awareness about this genetic disorder. The work that scientific researchers are conducting throughout the United States we hope will ultimately lead to a cure. Until then it is important that all of us show our support for families affected by fragile X. I encourage my colleagues to support the resolution. Mr. Speaker, I reserve the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I want to thank the gentleman from Oklahoma and the gentleman from Massachusetts for their fine work on this bill, and I yield back the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I move to suspend the rules and agree to the resolution (H. Res. 398) recognizing the devastating impact of fragile X, urging increased funding for research on fragile X, and commending the goals of National Fragile X Research Day, and for other purposes.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume. Mr. Speaker, today the House is considering House Concurrent Resolution 291, a resolution expressing the sense of the Congress with respect to endometriosis. Reported unanimously by the Committee on Energy and Commerce, this resolution will help raise awareness about a common disease that can unfortunately lead to devastating consequences for many women. Endometriosis is a painful, chronic gynecologic disease affecting approximately 10 to 20 percent of American women of childbearing age. Of those affected, about 30 to 40 percent will experience infertility. Unfortunately, the cause of endometriosis is unknown, and there is still no cure. Diagnosis can be difficult to confirm without surgery, and it is typically delayed by an average of 9 years. The National Institutes of Health is currently conducting several studies that may lead to other treatment options. Hormone treatments may show some success so that women affected by endometriosis may still be able to bear children. The resolution before us today recognizes the need for improved patient support, improved physician awareness, and more effective treatments, including a cure. I would like to thank the gentleman from California (Mr. McKeon) for his leadership in helping to raise awareness of endometriosis. Mr. Speaker, I encourage my colleagues to adopt the resolution. Mr. Speaker, I reserve the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days within which to revise and extend their remarks on this legislation and to insert extraneous material.

Mr. SHIMKUS. Mr. Speaker, I move to suspend the rules and agree to the concurrent resolution, (H. Con. Res. 291) expressing the sense of the Congress with respect to the disease endometriosis.

Mr. SHIMKUS. Mr. Speaker, I yield back the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I yield such time as he may consume to the gentleman from California (Mr. McKeon), the author of the legislation.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days within which to revise and extend their remarks and include extraneous material on this legislation.

Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume. Mr. Speaker, I would like to commend the distinguished gentleman from Louisiana (Chairman Tauzin) and my good friend, the gentleman from Florida (Mr. Foley), for their work in bringing attention to rare diseases and disorders. In the United States today, one in nine Americans suffer from a known rare disease or disorder for which there is often no good treatment or cure. The legislation sponsored by my colleagues works to correct that problem. Taken together, the Rare Diseases Act and its companion bill, the Rare Disease Orphan Product Development Act, encourage the development of better treatments, diagnostic procedures, and cures for large numbers of rare diseases and disorders. There are over 6,000 known rare diseases, and although each of them individually affects less than 200,000 people, the total number of Americans affected is over 25 million people. These acts build on the success of the Orphan Drug Act of 1983, which has led to the development of over 220 treatments for rare diseases and disorders, including Huntington's disease, Lou Gehrig's disease, and Tourette syndrome. Still, patients with rare diseases continue to face challenges in receiving appropriate and adequate treatment. The National Commission on Orphan Diseases estimated that only one-third of patients receive an accurate diagnosis in the 3 to 5 years after the onset of symptoms, and 50 percent of the population is not accurately diagnosed until 7 or more years after the onset of symptoms. Research into rare diseases and disorders provides hope for thousands of Americans and their families. This legislation does not detract from other worthy congressional research priorities of the NIH, such as the Children's Health Act of 2000. Instead, these bills increase funding for two programs that have already had a direct and positive impact on this community. They expand and enhance existing research under way at various institutes of the NIH. Again, I am pleased to support passage of these two pieces of legislation and stand ready to work with my esteemed colleagues to ensure that they are enacted into law. Mr. Speaker, I reserve the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I yield such time as he may consume to the gentleman from Florida (Mr. Foley), who has been an ardent spokesperson and supporter of this legislation.

Mr. SHIMKUS. Mr. Speaker, I have no further requests for time, and I yield back the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 4013) to amend the Public Health Service Act to establish an Office of Rare Diseases at the National Institutes of Health, and for other purposes.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 4014) to amend the Federal Food, Drug, and Cosmetic Act with respect to the development of products for rare diseases.

Mr. SHIMKUS. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days within which to revise and extend their remarks and to insert extraneous material on the bill, H.R. 4014.

Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume. Mr. Speaker, this is really my first day ever managing a bill on the floor of the House. I have done a lot of other things from speaking to presiding but never actually managing a bill; and it is really appropriate that this legislation that we just took up, H.R. 4013, and this piece of legislation, H.R. 4014, I cannot think of a better bill to have a chance to manage. And so I thank my chairman and the subcommittee chairman for doing that. Mr. Speaker, I also want to take this time to say that it is an honor to be managing with my friend, the gentleman from California (Mr. Waxman), because many times we are opponents on the legislative battles and the agenda. One of the great things about this institution is when we can work together from across the political divide and ideological divide to find issues that we become impassioned about and we join in forces that really help move legislation. So I extend my thanks to my friend from California (Mr. Waxman) and this will be a memorable day for me as I think back on my congressional career. Mr. Speaker, I rise today in support of this legislation, H.R. 4014, the Rare Disease Orphan Product Development Act of 2002. This bill is sponsored by my good friend, the gentleman from Florida (Mr. Foley), who will join us in a minute, and the gentleman from California (Mr. Waxman), and will increase the authorization for grants given to researchers who are developing cures and treatments for rare diseases. With more money available to these researchers, we will be better able to find cures for the 6,000 rare diseases affecting nearly 25 million Americans. And when you know a family who has someone affected by rare diseases, it does not seem that rare because it is time consuming, it is costly, and it makes you really be passionate about making sure everybody has some help in trying to find cures and drugs to help them alleviate the onset of their disease. Prior to the passage of the Orphan Drug Act in 1983, only a handful of drug and biologics had been developed to treat rare diseases. The reasons for this were simple. There was very little economic incentive for drug companies to spend the hundreds of millions of dollars it takes to develop a drug for a patient population totalling in the thousands. That is why prior to 1983 only 38 drugs had been developed for rare diseases. The Orphan Drug Act changes this by doing three things: offering greater exclusivity for drugs designed to treat diseases affecting fewer than 200,000 Americans, the establishing of a grant program for researchers performing clinical trials on orphan drugs, and providing a tax incentive program. The Orphan Drug Act has been a resounding success. Whereas fewer than 40 drugs have been developed in the past for rare diseases, in the past few decades more than 200 drugs have been developed and approved to treat these diseases. The bill before us today reauthorizes a grant program contained within the bill. Presently the government funds fewer than 100 researchers performing clinical trials into rare diseases, cures and therapies. While the demand is much higher, funding has been limited. This bill reauthorizes the grant program at 25 million in fiscal years 2003 through 2006, meaning more monies will be available to finding cures for these diseases. Mr. Speaker, I rise in strong support of this bill and commend the gentleman from Florida (Mr. Foley) and the gentleman from California (Mr. Waxman) for their sponsorship of this legislation. Mr. Speaker, I reserve the balance of my time.

Mr. SHIMKUS. Mr. Speaker, I yield such time as he may consume to the gentleman from Florida (Mr. Foley), a major sponsor of the legislation.

Mr. SHIMKUS. Mr. Speaker, I yield myself such time as I may consume. I appreciate my colleague's historical background. I am a relatively new Member still, in my sixth year, and I know there is a lot of water underneath the bridge on a lot of these issues, and it is always good to look back. He has been a leader and has been helpful on orphan drugs and pediatric exclusivity, and I am proud to have a chance to work with him on this legislation. I look forward to the opportunity to work with him more in the future as we try to make sure that all our citizens in this country have access to affordable health care.

Mr. SHIMKUS. Mr. Speaker, I have no other speakers on my side, and I yield back the balance of my time.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, I thank the chairman for yielding me this time. I am pleased to follow the gentleman from Illinois (Mr. Davis), as we have struggled with this West Nile, and we have throughout the country. As a young child, fogging was pretty common. I remember being at the local community pool and the truck would go buy, and we would all dunk underneath the water; and as it would go out, then we would get up and swim. And then we had a long reprieve from the aspects of really going after and attacking the mosquito populations, and we can no longer afford to do that, especially with the West Nile virus, and it is being carried. Yes, Illinois has been hit hard. Illinois has had its fair share of deaths; and yes, we at the Federal level need to partner and assist our local responders. We need to move through this authorization, and, more importantly, work with the appropriators to help bring the resources needed to partner with the local communities. This is a very important bill. It directly affects our constituents. This is the Federal Government responding in a timely manner to be involved in this outbreak and this attack on our citizens. I applaud the gentleman from Louisiana (Mr. Tauzin) and the gentleman from Louisiana (Mr. John) and the chairmen of the subcommittees for moving this expeditiously to the floor.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, as a cosponsor of the bill and as a proud member of the Committee on Energy and Commerce, I would like to commend the distinguished gentleman from Florida (Mr. Bilirakis), the Commerce Subcommittee on Health and all those who have worked to bring this legislation to the floor. This bill will improve access to quality preventative and primary health care for the medically underserved, including the millions of Americans, many who reside in Illinois, without health insurance coverage. First and foremost, H.R. 3450 would reauthorize the critically important Community Health Centers Program for another 5 years, including reaffirmation that health centers be located in high-need areas; provide comprehensive preventive and primary health care services; governed by community boards made up of a majority of current health care center patients to assure responsiveness to local needs; and open to everyone in the communities they serve, regardless of ability to pay. I have been in love with community health centers since I have been involved here in Washington. They are meeting a great need. That is why I wholeheartedly support what we are doing here. This legislation also authorizes for the very first time the Community Access Program, the CAP program as has been talked about earlier before me, which supports the development of communitywide networks to organize and improve access to health care in low-income and uninsured populations. The CAP program has proven successful in improving health care access, reducing emergency room use and saving money through shared resources and economies of scale. I have had the opportunity to observe the benefits of this important program up close when I visited Macoupin County Health Department and the Springfield and Sangamon County Comprehensive Community Health Initiative, two innovative CAP projects in my district. I am proud to report that these two projects have helped tremendously to both expand and strengthen the health care safety net in the communities I represent. I am pleased that H.R. 3450 includes a 5-year authorization for the CAP program. However, as has been stated by the chairman and the gentleman from Texas, H.R. 3450 limits the number of grants nationally to 35. Given that there are currently 136 grantees and many more prospective CAP participants, I strongly support efforts to achieve the strongest CAP provisions possible as the bill moves forward, most importantly the elimination of the bill's limit on the number of CAP grantees. Again, I am pleased to support passage of H.R. 3450, and I stand ready to work with my esteemed colleagues to ensure that the Health Care Safety Net Improvement Act is enacted into law. I look forward to working with the gentleman from Florida (Mr. Bilirakis) and the gentleman from Texas (Mr. Green) in the future.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, I rise today to honor the life of Verlyan Ruth Byrd. Ruth passed from this life on July 28th. Her passing left a gap in the lives of those who knew her, but also in the lives of many others who did not. She was a compassionate and tireless advocate on behalf of others who were, like her, impacted by the Government Pension Offset provision. Ruth worked to repeal the Offset, knowing how such a repeal would help others whose Social Security benefits were reduced as a result of the Offset. Ruth had many friends who joined her in her efforts to repeal the Offset and will carry on in her memory. One of those friends, Cory Grah, continues to make an impact on this issue. It's for people like Ruth and Cory, that I once again call on my fellow members of Congress to join me in our efforts to repeal the Government Pension Offset once and for all. There are more Ruths and Corys out there, and they deserve better.

Mr. SHIMKUS

Mr. SHIMKUS. Mr. Speaker, it is no secret that the Tax Code hurts our economy. We all know that Americans who try to save get penalized and that many Americans need tax attorneys and lawyers to help them file their returns, especially the farmers and small businessmen impacted by the death tax. While the House has passed legislation to make the death tax repeal permanent, because a temporary repeal of the death tax just makes no sense, it still has not been signed into law. As we wait, families are selling their farms and their businesses just to pay their taxes. They are putting money into hiring attorneys and lawyers to find ways around the tax instead of investing in their businesses and hiring new workers. All this is happening while the rich continue to avoid the estate tax by setting up charitable foundations and other schemes. Mr. Speaker, family farms and businesses, especially in Illinois, have the right to pass the fruits of the labor on to their children. Congress needs to act. I look forward to voting on this legislation today, and I urge my colleagues to support this legislation.