National Pediatric Research Network Act of 2013

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 2019) to eliminate taxpayer financing of presidential campaigns and party conventions and reprogram savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health, and for other purposes, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days to revise and extend their remarks and insert extraneous materials in the Record on the bill.

Mr. Speaker, I yield myself 3 minutes.

Mr. Speaker, I rise today in support of the Gabriella Miller Kids First Research Act of 2013. H.R. 2019, authored by my colleague, Gregg Harper, is a bill that will help countless kids and families across the country.

The Gabriella Miller Kids First Research Act would prioritize funding for the research of pediatric diseases and disorders such as cancer, autism, and Fragile X. It would eliminate taxpayer financings of party conventions, political money, and use these funds instead to expand pediatric research at the NIH Common Fund through their common fund. This bill certainly does put kids first.

You know, Gabriella Miller was a little warrior in the battle against childhood cancer. At only 10 years of age, she had the courage miles beyond her years. A frying pan and a walnut is all you need to understand her brave outlook on life.

When she was diagnosed with brain cancer, she was told that the size of that tumor was about like a walnut; and from then on, Gabriella traveled with her trusty frying pan squashing countless walnuts along the way all over the world.

That is the kind of courage and outlook on life that she had. Advancing health research for millions of young patients who suffer from rare and genetic diseases has got to be a priority. While we have made great strides in the country in finding cures and treatments, we certainly have a great amount of work to do. Included in the work is pushing for research that is going to help uncover cures for pediatric diseases.

In order for clinical trials and other advancements to meet their full potential, adequate resources have got to be directed for pediatric research. The legislation is an example of how much can be accomplished by ending wasteful spending and redirecting those funds towards national priorities like pediatric research.

This effort is going to help families like the Kennedys in Mattawan, Michigan, my constituents. Eric and Sarah have two wonderful little girls, Brooke and Brielle, who have the rare disease called spinal muscular atrophy. Those two little angels, who are fighting SMA with the same vigor and sunny outlook exhibited by Gabriella, are decorated little generals in the effort to boost research for rare diseases and serve as inspiration for every one of us.

The sad reality is that it is often difficult to conduct research into rare diseases due to the small number of individuals with those diseases; but we are working to change that--yes, we are--and provide families with greater hope for a cure and in advances of treatment.

This bill has over 150 cosponsors and is supported by a long list of patient advocacy groups including Autism Speaks, Juvenile Diabetes Research Foundation, Leukemia and Lymphoma Society, and FightSMA.

I wholeheartedly agree with the bill's Democrat sponsor, Peter Welch from Vermont, who recently said last night on CNN:

Can we just put the battle axes down for a while and take a

step forward?

He thinks we can. We need to.

With all of us today with so many diseases, we need to pass this bill.

I reserve the balance of my time.

Angelman Syndrome Foundation,

Aurora, IL, July 5, 2013.

Hon. Eric Cantor,

Majority Leader, House of Representatives,United States

Capitol, Washington, DC.

Hon. Gregg Harper,

House of Representatives, Cannon House Office Building,

Washington, DC.

Dear Leader Cantor and Congressman Harper: On behalf of the

Angelman Syndrome Foundation, ASF, I write in strong support

for H.R. 2019, the Kids First Research Act. This important

legislation will

expand pediatric medical research activities at the National

Institutes of Health, NIH, by approximately $130 million.

Pediatric research should be a national priority, and ASF

applauds Congressman Harper for his leadership on this issue.

This legislation has the potential to develop treatments and

unlock the cure for thousands of impacted children, including

those with Angelman Syndrome.

Angelman syndrome is a single-gene neurodevelopmental

disorder that is related to autism. Continued research for

pediatric neurodevelopmental disorders, such as Angelman

syndrome, will lead to effective treatments that will help

combat the autism epidemic in the U.S. The Angelman Syndrome

Foundation's mission is to advance the awareness and

treatment of Angelman syndrome through education and

information, research, and support for individuals with

Angelman syndrome, their families and other concerned

parties. We exist to give all of them a reason to smile, with

the ultimate goal of finding a cure.

On behalf of ASF, thank you again for your leadership and

for supporting the Kids First Research Act.

Sincerely,

Eileen Braun,

Executive Director.

Mr. Speaker, I yield 2 minutes to my friend from Virginia (Mr. Wolf), a member of the Appropriations Committee.

Mr. Speaker, I yield myself 30 seconds.

Mr. Speaker, I just want to remind my friends that this is bipartisan legislation. I congratulate Mr. Welch for being the lead Democratic sponsor.

I just want to say, too, in terms of looking at the money, the bill itself says:

All amounts in each account maintained for the national

committee of a major party or minor party under this section

shall be transferred to a fund in the Treasury to be known as

the ``10-Year Pediatric Research Initiative Fund,'' which

shall be available only for the purpose provided in section

402A(a)2 of the Public Health Service Act, and only to the

extent and in such amounts as are provided in advance in

appropriations Acts.

Tell me how to write it tougher. We did it.

I yield 2 minutes to the gentleman from California, (Mr. McCarthy), the majority whip.

Mr. Speaker, I yield 1 minute to the gentleman from Virginia (Mr. Cantor), majority leader of the House.

Mr. Speaker, I yield 3 minutes to the gentleman from Mississippi (Mr. Harper), the sponsor of the bill.

Mr. Speaker, at this point, I yield 1 minute to the gentleman from New Jersey (Mr. Lance), a cosponsor of the bill and a member of the Energy and Commerce Committee.

Mr. Speaker, at this point, I yield 3 minutes to the gentleman from Oklahoma (Mr. Cole), a member of the Appropriations Committee and a cosponsor of the bill.

Mr. Speaker, I yield 2 minutes to the gentleman from Georgia (Mr. Collins), a cosponsor of the bill.

Mr. Speaker, I yield myself the balance of my time.

Mr. Speaker, I did appreciate the nice words that were directed to me by my friend, Mr. Hoyer, in support of the NIH. And I will remind those that don't know that I was the Republican lead a number of years ago with Mr. Waxman and Mr. McCain and Mr. Wellstone to double the money for the NIH, one of the most significant things that this Congress, I think, has ever done.

But I have got to say, I simply don't understand the opposition to this bill. Yes, I am absolutely supportive of the NIH bill, and will continue to do that, and more money. The Ryan-Murray budget agreement which we will be voting on tomorrow, I will be supporting it. It includes programs like the NIH, which I am told will be increased about $23 billion, or 2 percent over the current levels.

In today's ``The Hill,'' there is a full-page ad offered by First Focus Campaign for Children. It says, ``Thank you for making children your First Focus,'' and it lists maybe as many as 80 to 100 Members, including many of those who spoke today against the bill, but it says, ``Thank you for making children your First Focus.'' That is what this bill is about.

It is not just a simple authorization. Yes, we do pass those from time to time. This actually directs. The language of the bill says, ``shall be transferred.'' Shall. It doesn't use the word ``may,'' ``may be,'' whatever. ``Shall be transferred to a fund in the Treasury to be known as the `10-Year Pediatric Research Initiative Fund' which shall''--not may--``which shall be available only for the purpose provided in . . . the Public Health Service Act, and only to the extent and in such amounts as are provided in advance in appropriation Acts.''

We made it pretty tight. The authors of this bill made it pretty tight. Tell me how we can make it tighter.

I yield to the gentleman from Maryland.

Well, to me, we use ``shall'' a number of different times.

Well, that is what we do. We take money.

The money comes from the political conventions. I mean, that is the direct offset that is used.

All of us cry for these families that lose these beautiful little kids. This bill, if it passes and gets enacted, will provide money to help families like Gabriella's, who lost a beautiful little girl, who really used the last year of her life to promote a fund like this and work with the NIH. That is what this should be all about, and I commend Mr. Cantor and others.

The rule that we hear is you have to find an offset when you increase spending. That is what this bill does. And it finds an offset that I think many of us could accept to actually fund the program and direct the dollars to a fund within the NIH to make sure that it works. That is what we want to have happen.

I would urge my colleagues to vote for this bill. Yes, it is under suspension, no amendments. We need a two-thirds vote, so I ask my colleagues to support this bill.

I yield back the balance of my time.

Mr. Speaker, I thank the chairman, the gentleman from Michigan.

Mr. Speaker, I rise in strong support of the Gabriella Miller Kids First Research Act. I also would like to thank my colleague, the gentleman from Vermont, for his courage in providing bipartisan support, along with some other colleagues in support of this bill, as well as the Republican cosponsors, Gregg Harper from Mississippi and Tom Cole, my colleague from Oklahoma who is here in this Chamber.

For those colleagues who are here in the Chamber, we are joined by Gabriella Miller's parents, Ellyn and Mark Miller, who are in the gallery. I want to thank them for their courage in being here and for their understanding of what goes on on this floor and to not take it in any other way other than we are trying to do what is right in terms of delivering on the legacy of their daughter.

Mr. Speaker, Gabriella Miller, a young girl from Virginia, was only 9 years old when she found out she had an inoperable brain tumor the size of a walnut and wasn't given long to live. Despite her diagnosis, Gabriella and her family chose to fight and share her dream with others of overcoming childhood disease.

Gabriella was so determined that she captivated people's hearts at rallies, through online videos, and raised hundreds of thousands of dollars for the Make-a-Wish Foundation. She even wrote a book for other children about understanding cancer. She poured every remaining ounce of her life into raising awareness for pediatric research for other children, with the hope that they would not have to suffer the same fate. In her last few months, Gabriella left a mark on the world that will never be forgotten.

Mr. Speaker, there is no question that Washington has a spending problem. The problem is not only that we spend too much, but that we are spending taxpayer dollars on the wrong priorities. Medical research for children should be a national priority.

The first NIH bill I scheduled as majority leader was a bipartisan bill authored by Representative Cathy McMorris Rodgers and Representative Lois Capps to strengthen pediatric research networks. The President signed the bill into law last month.

The bill before us today builds on that legislation by providing resources through the NIH Common Fund for high-risk, high-reward research that has the potential to transform pediatric research for children suffering from many different diseases and disorders. For the first time, Congress will establish a Pediatric Research Initiative Fund that will serve as an accountability mechanism to help ensure that dollars are reaching their intended target.

While all of us support the NIH, this bill is an opportunity to push the agency to make big discoveries that will improve and ultimately save so many lives. We don't have to accept the status quo as the best we can achieve. Yes, the NIH needs taxpayer resources, but it also matters how we invest and apply those dollars.

Now, Mr. Speaker, some of my colleagues on the other side of the aisle say this is just a drop in the bucket compared to the sequester cuts. I agree. The sequester cuts were, unfortunately, indiscriminate, and I and my colleagues have proposed alternatives to them, but let's not let Washington politics get in the way of any effort to help these kids. This is one step of many that we should take together.

How many times do we meet parents and families who share their stories and ask for help? I recently had the privilege of meeting Gabriella's parents, Ellyn and Mark, and they personally shared with me Gabriella's fighting spirit. In fact, in one of her last interviews-- and you can view this online--when asked what Gabriella would like to tell our political leaders, she said, ``Stop talking. Start doing. We need action.''

This, Mr. Speaker, is our opportunity to act.

Outside of this building, this legislation has tremendous support. The leading children's research hospitals, United for Medical Research, and over 100 patient advocacy groups support this bill. Currently, it leads all other bills on cosponsor.gov with over 2,500 citizen cosponsors. This kind of support is great, but what matters now are the Members of this House and how they vote. The question before the Members today is simple: What is more important--finding cures for our children or balloons for party conventions and catering for politicians?

The bottom line is that this bill is a choice between allocating moneys for political conventions or pediatric medical research. That is the choice. The bill isn't just about a government agency or taxpayer dollars. It is not about Democratic issues or Republican issues. It is about a cause, frankly, that should unite each and every one of us.

Yes, I would say to my colleague from California that this is a serious first step--it is not everything--but to not sit here and impugn anyone's motives, much less say something that is somehow a commentary that this isn't constructive towards the plight of the parents like the Millers who are around this country and who are searching for some indication that we can break the political gridlock on an issue like this. I align myself with the comments of my colleague from Vermont, who says, Can't we just put down the battle axes for something like this? Can't we all do that for somebody like Gabriella?

Now, Gabriella may no longer be with us, but her fight lives on. I ask, Mr. Speaker, that all of us stand united today and join in this fight.

Again, I want to thank Congressman Gregg Harper, and I want to thank Congressman Peter Welch for introducing this bill as well as to thank Congressman Cole from Oklahoma. Earlier this year, they began the effort to join with so many who have come before in order to raise awareness of the need for medical research and, yes, this time, of the need for us to prioritize the funding for pediatric research.

I would like to thank Gabriella's parents, the Millers, who are so brave in their commitment to this effort and who realize this is just a first step--being here with us today and joining us in this fight.

I strongly urge my colleagues to support this bill.

Announcement by the Speaker Pro Tempore

I thank my friend for yielding.

Mr. Speaker, I want to begin by praising my friend Gregg Harper and my friend Peter Welch, who come to this floor with a very worthy purpose, and that is to redirect government funding toward something that is not particularly important toward something that is very important--medical research for children.

The question when you have a worthy goal is always: How do you pay for it? Where will you actually get the resources?

For many years, I have brought to this floor legislation that would eliminate public funding for political party

conventions and Presidential campaigns. I could go into debate ad infinitum. The President has never used any public funding--didn't feel the need for it--in either of his two campaigns. Neither did Mr. Romney. On the political conventions, both political parties this year actually did take the money.

I can tell you as a former chief of staff on the Republican National Committee who put on the convention in 2000, they do not need it. They absolutely do not need it. They can raise all the money they need from private sources, just as their nominees raised money from private sources.

That bill has actually passed this House on multiple occasions with a bipartisan vote. I was prepared to do that again and I got a call from Leader Cantor. He said: Tom, I know you have been working on this problem for a long time. I know you are concerned about it. What if we redirected that money towards something that is a better purpose, a better use of public dollars? And he mentioned Gregg's bill. I couldn't agree with him more.

So for those of you that are looking for something sinister or trying to link this to something it is not connected to, like the sequester, it is simply a modest step in the right direction. It takes money that we know is wasted and puts it to good use.

For those of you that say it can't pass the other body, the other body in the last Congress on amendment voted 95-5 to take away public funding of political conventions. We still have a disagreement on Presidential campaigns. But funding political conventions really is more important than directing this money to a more worthy purpose? We are not even trying to take it out of the Federal budget. I just think that kind of logic defies imagination.

This is a good-faith effort to do something that ought to bring us together instead of pull us apart. It is a modest step. I would be the first to admit that. But let's take the modest step in the right direction, take public dollars that we are now wasting on political conventions, give them to researchers, and let them do their work. That is just simply a better use of the public purse in a time of limited means.

So I urge support for my friends' bill, H.R. 2019, Mr. Harper and Mr. Welch. I want to thank Leader Cantor. This was his idea of bringing two ideas together. I think it is a good one. I hope this House embraces it in a bipartisan fashion.

I want to thank my friend, the chairman of Energy and Commerce, for his effort to bring this forward and advance it.

Everylife Foundation

for Rare Disease,

Novato, CA, June 10, 2013.

Hon. Gregg Harper,

House of Representatives, Cannon House Office Building,

Washington, DC.

Dear Congressman Harper: The EveryLife Foundation for Rare

Diseases is dedicated to accelerating biotech innovation for

rare disease treatments through science-driven public policy.

We are writing to support the Kids First Research Act of

2013 (H.R. 2019). This bipartisan bill would eliminate

taxpayer financing of presidential campaigns and party

conventions and reprogram those savings to provide for a 10-

year pediatric research initiative through the Common Fund

administered by the National Institutes of Health.

During these trying fiscal times, we are pleased to see

efforts that would increase funds for pediatric research.

Unfortunately, pediatric rare diseases and cancer is terribly

underfunded and largely overlooked by drug companies and

research institutions. Public funding is essential to help

spur the development of treatments for these children.

We are pleased to express our strong support for H.R. 2019,

and believe this legislation will help to bring increased

funding and awareness to pediatric medical research. We look

forward to working with you and your staff to ensure this

bill is enacted into law.

Sincerely,

Emil D. Kakkis, M.D., Ph.D.,

President.

First of all, I want to thank Congressman Peter Welch for his hard work on this bill, and I certainly thank Leader Eric Cantor and Congressman Tom Cole.

Mr. Speaker, creating a lifetime of hope and opportunity for our most vulnerable kids is more important than subsidizing weeklong political pep rallies for the Democratic and Republican parties. This is why the House must advance H.R. 2019, the Gabriella Miller Kids First Research Act, a bill that pays for children's medical research with the $126 million that the Federal Government currently sets aside for political conventions.

On November 14, 2013, I had the privilege to meet in Leader Cantor's office with Ellyn and Mark Miller. I watched them struggle to come up with the words to express their grief, which I saw become steadfast determination to do something special for Gabriella by allowing this bill to be named after their precious daughter. I am wearing the yellow ``Smashing Walnuts'' bracelet that they gave me that day. I have watched numerous videos of Gabriella in which she has made moving and profound statements, such as, ``Once you get cancer, you kinda gotta be all grown up,'' and ``Sometimes you have to stop talking and start doing.''

As the father of a 24-year-old son who is living with Fragile X syndrome, I understand the challenges families face in raising children with special needs, but I also recognize the value of expanded and improved medical research. While raising a child with a genetic disorder can be very difficult, for my family, it has been a blessing, especially knowing that my son, Livingston, is here today.

Mr. Speaker, Evie Horton and her cousin, Reese McDonald, who are kids from Mississippi who fight with all of their strength to overcome the struggles of spinal muscular atrophy, are two more reasons that I introduced this bill. Recent scientific research breakthroughs have also given hope to so many families, but in order for clinical trials and other advancements to meet their full potential, additional Federal research must be directed to pediatric research.

Mr. Speaker, Members of both parties have an opportunity to demonstrate the priorities of this body. Will it be research for our most vulnerable kids or will lawmakers vote to continue funding political party conventions at the taxpayers' expense?

I have listened to how this has been described by the other side. It has been called a joke, a ruse, a fraud, not credible, window dressing, smoke and mirrors, and their referring to Republicans supporting sequestration, I guess, means that it has been forgotten by our friends on the other side of the aisle that 95 Members of the Democratic Party voted in favor of sequestration.

Mr. Speaker, let's get our priorities straight. Let's vote ``yes'' on the Gabriella Miller Kids First Research Act.

National Fragile X Foundation,

Walnut Creek, CA, June 12, 2013

ATTN: Scot Malvaney, Policy Director.

Representative Gregg Harper,

Cannon Building, Washington, DC.

Dear Representative Harper: Confirming our earlier

conversations with your office, the National Fragile X

Foundation indeed agrees that additional research is needed

to find the cures for fragile x syndrome, autism spectrum

disorder, childhood cancer, and many other diseases impacting

children.

We are therefore pleased to add our support to The Kids

First Research Act (H.R. 2019) that you recently introduced

with Representative Tom Cole.

As you well know, Fragile x syndrome is one of the

conditions for which a cure (or targeted treatments) exist

right around the corner.

We wholeheartedly support this critical research initiative

which seeks both to identify much needed additional funding

for the NIH and to promote collaborations and collaborative

spending across related conditions like fragile x syndrome

and autism.

Thank you for your leadership on this important issue.

Jeffrey Cohen, JD,

Director, Government Affairs.

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

Mr. Speaker, I rise in opposition to the bill before us today because it is a disingenuous and empty attempt by the Republicans to divert attention from the fact that they have voted to cut research time and time again. So instead, they will stand before the American public with words that they have no action to back up.

The National Institutes of Health serve a vital mission of supporting biomedical research so that we may better understand and better treat diseases that burden American families; and I stand firmly in favor of supporting NIH research funding, especially as it relates to pediatric research.

Let me be very clear for the record here today. H.R. 2019 does not achieve this purpose. Had this bill, which had been introduced back in May, gone through regular order and come to the Committee on Energy and Commerce for hearings and markup, we would have had the opportunity to discuss and debate the merits of the legislation.

This bill claims to support research on childhood diseases by authorizing--and I note not appropriating, but only authorizing--$12.6 million for NIH pediatric research grants through savings from ending the public contribution to the cost of political party nominating conventions.

I emphasize that the bill only authorizes funding because I would like to point out that the appropriations needed to actually make these funds available to NIH would still be subject to discretionary spending caps of the Budget Control Act and sequestration cuts.

Now, the sequester alone has cut $1.5 billion out of NIH'S funding in fiscal year 2013. Even worse, through the Ryan budget, the Republicans adopted spending allocations for fiscal year 2014 that would make additional cuts to NIH, which could result in $6.7 billion in cuts in total.

For pediatric research, the proportional cut would amount to $800 million, which is 60 times more than the increase that this bill claims to provide. That's why I think the Republicans are not making a sincere effort to support NIH research. This is a joke.

The best thing, Mr. Speaker, we can do to support NIH and research on pediatric diseases is to pass a balanced and constructive budget package and to provide the Appropriations Committee with a reasonable and realistic amount of funding to work with.

Until then, I would urge my colleagues to oppose this bill that is nothing but a guise. It is a ruse. It does nothing to ensure that we are increasing pediatric cancer research dollars.

Mr. Speaker, I yield 3 minutes to the gentleman from California (Mr. Waxman), ranking member of the Energy and Commerce Committee.

I yield the gentleman an additional 1 minute.

Mr. Speaker, I yield 2 minutes to the gentleman from Vermont (Mr. Welch).

Mr. Speaker, I now yield 1 minute to the gentleman from Tennessee (Mr. Cohen).

Mr. Speaker, I now yield 2\1/2\ minutes to the gentleman from North Carolina (Mr. Price).

Mr. Speaker, can I ask how much time is remaining on both sides.

Thank you.

I yield 1\1/2\ minutes to the gentlewoman from New York (Mrs. Lowey), the ranking member of the Appropriations Committee.

Mr. Speaker, I yield 2 minutes to the gentlewoman from Connecticut (Ms. DeLauro), who is the ranking member of the Labor-HHS Appropriations Subcommittee.

Mr. Speaker, I yield an additional minute to the gentlewoman from Connecticut.

Mr. Speaker, I yield 2 minutes to the gentleman from Maryland (Mr. Hoyer), our Democratic whip.

I yield an additional minute to the gentleman from Maryland.

I yield the balance of my time to the gentleman from Maryland.

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

Mr. Speaker, on that I demand the yeas and nays.