Above: Gottheimer stands with Sean O’Malley, a Fair Lawn patient of  Hackensack Meridian Children’s Hospital and advocate for pediatric cancer research whose leukemia is now in remission.

Today, Tuesday, October 15, 2019, U.S. Congressman Josh Gottheimer (NJ-5) announced bipartisan legislation introduced in Congress — the Fairness to Kids with Cancer Act — to increase federal investment in pediatric cancer research, so more clinical trials receive investment and more children’s lives are saved.

Cancer is the number one cause of death of children from any disease. According to the CDC, New Jersey has the third highest rate of pediatric cancer in the country.

However, only four percent of federal cancer research investment is allocated to pediatric cancer research. 

Every year about 12 drugs are developed in the United States and approved by the FDA for the treatment of adult cancers. However, since 1978 there have been just 6 drugs, total, developed and approved by the FDA for pediatric cancers.

For example, while brain cancer is the leading cause of disease related death in people under the age of 20, there has not been a child-specific drug developed for brain cancer since the 1970s. In fact, some children receive the same treatment that Neil Armstrong’s daughter received in the 1960s. 

The Fairness to Kids with Cancer Act will adjust the level of federal investment in pediatric cancer research to match the percentage of American citizens under the age of 18, based on U.S. Census data. According to 2010 Census data, 24 percent of the U.S. population is under the age of 18, meaning the allocation for pediatric cancer research would increase to 24% of the total federal investment.

“It’s heartbreaking, because there are children behind every statistic. Pediatric cancer has touched far too many families, including my own. But in time, the Fairness to Kids with Cancer Act will help find cures, change lives, and save lives,” said Congressman Josh Gottheimer (NJ-5). “With so much cutting-edge research and life sciences development taking place in New Jersey, this boost in investment will mean that our state will play a key role in helping find these cures. I’m looking to pave the way for New Jersey, and great centers like here at Hackensack Meridian, to be leaders in finding hope, not just for kids in North Jersey, but nationwide, and around the world.”

Gottheimer made today’s announcement at Hackensack Meridian Health Joseph M. Sanzari Children’s Hospital alongside Fair Lawn High School senior, Hackensack Meridian Children’s Hospital patient, and leukemia survivor Sean O’Malley and his family; Hackensack Meridian CEO Bob Garrett; Hackensack University Medical Center President Mark Sparta; and Dr. Derek Hanson, Program Head of Pediatric Neuro-oncology at Hackensack Meridian Children’s Hospital.

“When I was diagnosed, a million different things went through my head. How long does this take? What will happen with school? What are the chances of me dying? Despite all of this, I put my head down and battled this disease with everything I had. Within a month of beginning treatment, I was in complete remission,” said Fair Lawn High School senior Sean O’Malley. “When I learned about the statistics regarding the lopsided federal cancer research budget, it angered me because sick kids were getting the short end of the stick, and most are too young to even realize it. I’m hopeful that as more people are educated about this issue, they will work to increase funding for pediatric cancer research.”

“The Congressman has been an incredible friend to Hackensack Meridian, an incredible friend for health care in New Jersey, and I thank you for your leadership, including the announcement today,” said Hackensack Meridian CEO Bob Garrett. “I’d like to thank Congressman Gottheimer for his efforts to increase funding for pediatric cancer research. We fully support it, at Hackensack Meridian, the Fairness to Kids with Cancer Act and encourage all lawmakers to ensure this legislation becomes a reality. In this era of partisanship down in Washington, the Congressman is a breath of fresh air.”

“Pediatric cancer is not a red issue, it’s not a blue issue, it’s an issue that affects all of us. So, all of us need to get behind Congressman Gottheimer and his fellow representatives as they look to push this bill forward and secure the funding our children so desperately need,” said Dr. Derek Hanson, Program Head of Pediatric Neuro-oncology at Hackensack Meridian Children’s Hospital. “We can all work together to achieve our goal of tackling kids cancer.”

The Fairness to Kids with Cancer Act has been introduced by Representatives Brian Fitzpatrick (PA-01), Brendan Boyle (PA-02), Josh Gottheimer (NJ-05), Mike Kelly (PA-16), Stephanie Murphy (FL-07), and Elise Stefanik (NY-21).

Below: From left to right, Hackensack Meridian CEO Bob Garrett, Children’s Hospital supporter Heidi Rispoli, Congressman Josh Gottheimer, Fair Lawn High School senior and leukemia survivor Sean O’Malley, Program Head of Pediatric Neuro-oncology at Hackensack Meridian Children’s Hospital Dr. Derek Hanson, and Hackensack University Medical Center President Mark Sparta.

Gottheimer’s full remarks as prepared for delivery are below.

Thank you, Sean, for that wonderful introduction, and thank you to the O’Malleys for being here today at the Joseph M. Sanzari Children’s Hospital and for all you do in supporting Hackensack’s Children’s Cancer Institute. Sean and his family are an inspiration to us all.

Thank you to all the incredible doctors, nurses, administration, American cancer society, and to the many organizations in New Jersey who work to fight for a cure and staff here at Hackensack Meridian, Hackensack’s largest employer, not only for having us here today, but for all the life-saving work you do, day in and day out, for our community, for our families, and for so many children.

And thank you to my good friends, the board members, Hackensack Meridian CEO Bob Garrett, Hackensack University Medical Center President Mark Sparta, and Dr. Derek Hanson, Head of Pediatric Neuro-oncology here, for also speaking out on this important issue. And thank you to Balpreet for your work at the hospital and medical center, and for bringing us all together here today.

Thanks as well to our Fifth District friends from the American Cancer Society, Bonnie, Diana, and Sister Lopez. I know you all are always working toward a cure, so thank you for all of your hard work.

I’m here today to help announce a new bipartisan initiative in Congress to boost federal investment in pediatric cancer research.

Cancer is the number one cause of death of children from any disease.  Here in New Jersey, according to the CDC,  we have the third highest rate of pediatric cancer in the country. Only New Hampshire and Washington, D.C. have higher rates.

It’s heartbreaking, because there are children behind every statistic. Pediatric cancer has touched far too many families, including my own. We lost our Karyn from leukemia when she was just fourteen. My aunt and uncle tried everything to save her, but, despite all the doctors and all the hospitals they went to — a cure just didn’t exist. Unfortunately, my family isn’t alone in our experience. When it comes to medical research and cures, we just aren’t making the progress we should be, fast enough, for our children. 

Right now, only four percent of federal cancer research funding is allocated to pediatric cancer research. Just FOUR percent – of ALL federal investment in cancer research. 

A bipartisan group of us in Congress have been working to change that, to bring more hope to more children and their families in New Jersey and across our country. Along with my colleagues Congressman Brian Fitzpatrick of Pennsylvania, Elise Stefanik of New York, Brendan Boyle of Pennsylvania, Stephanie Murphy of Florida, and Mike Kelly of Pennsylvania, I just introduced the bipartisan Fairness to Kids with Cancer Act.

This bipartisan bill will adjust the level of federal investment in pediatric cancer research to match the percentage of American citizens under the age of 18.

This calculation will be based off of the federal Census, and, obviously, we have another one coming up shortly. According to the 2010 Census numbers, 24 percent of the U.S. population is under the age of 18. That means, when this bill becomes law, we would boost the level of federal investment in pediatric cancer research from 4 percent to 24 percent — a 500 percent increase.

In time, the Fairness to Kids with Cancer Act will help find cures, change lives – and save lives.

A few weeks ago, I met a woman from Pennsylvania on the steps of the Capitol back in Washington, alongside Congressman Fitzpatrick, who’s helping lead this bipartisan bill. Her name is Mina and she’s a mother and a teacher. She wasn’t able to be with us here this morning, but I want to tell you a bit about her story.

Mina told me about a day in September, three years ago, when her seven-year-old daughter was diagnosed with DIPG – Diffuse Intrinsic Pontine Glioma, an aggressive and rare form of brain cancer. Only 10 months later, Mina’s daughter sadly lost her battle with the disease.

Brain cancer is the leading cause of disease related death in people under the age of 20. But there has not been a child-specific drug developed for brain cancer since the 1970s.

Mina told me that her daughter’s treatment was the same as the treatment Neil Armstrong’s daughter received in the 1960s.

We must fix that.

For some kids, like Sean, who bravely battled his disease, the research and the treatments were there for him, and they worked.

And Sean, I’m incredibly excited for next August when you’re totally done with your treatment.

But like Sean said, many kids are getting the short end of the stick.

Every year about 12 drugs are developed in the United States and approved by the FDA for the treatment of adult cancers.

12, every year.

However, since 1978 there have been just 6 drugs, TOTAL, developed and approved by the FDA for pediatric cancers.

We’re here today to turn that around.

As you know, here in New Jersey, the medicine cabinet of the world, we are a leader in biopharma R&D. The biopharma industry alone supports more than 300,000 jobs here and produces $83 billion in economic output every year.

With so much cutting-edge research and life sciences development, and with the National Institutes of Health investing in it here, this boost in investment will mean that our research centers, right here in Jersey, will play a key role in helping find these cures to pediatric cancers.

While I’m here, I’d like to acknowledge the great life sciences sector and patents and innovation that Jersey has fostered. In 2017 alone, this industry supported nearly 800 clinical trials in our state, just that year — and that reached nearly 17,000 trial participants across Jersey.  And outcomes of that R&D impacts real patients, administered by the best doctors in the country – right here in Hackensack and in hospitals and doctors’ offices across our state.  

New Jersey is a leader in helping keep all of humanity healthy.

And this increased investment in cancer research– and the work that goes on here in North Jersey – is essential, which is why I’ve been fighting for it elsewhere, too.

NCI, the National Cancer Institute — which coordinates the U.S. National Cancer Program and is part of NIH, the National Institutes of Health — plays a critical role in accomplishing this work. That’s also why I helped fight for and win increased investment in NIH for Fiscal Year 2020.

Hackensack Meridian is able to do an incredible amount of good work with the investment they’ve received from NIH. And I’ve helped fight for and win increased investment for Fiscal Year 2020 in the National Cancer Institute.

Beyond pediatric cancer, our families facing other diseases need our help too, which is why I’m also working across the aisle, with my colleague Congressman Fred Upton, to restore the Orphan Disease Tax Credit.  It was cut in half by the 2017 Tax Hike Bill. Reinstating this tax credit will promote research investment on rare diseases that desperately need our attention.

Of course, we need to maintain focus on finding cures for the cancers hurting so many adult lives, but children deserve the chance to find hope too.

And that’s what I saw in Mina, when I met her on the Capitol steps — hope that more research can occur, so that more families don’t have to go through what her family had to. And I know Sean has hope too.

With our bipartisan Fairness to Kids with Cancer Act, my four colleagues and I are looking to pave the way for cures and for hope.

And I’m looking to pave the way for New Jersey, and great centers like here at Hackensack Meridian, to be leaders in finding that hope, not just for kids in North Jersey, but nationwide, and around the world.

Together, working across the aisle, I know that we can boost investment to find these cures, and I know that our best days will always be ahead of us.

Thank you again to everyone here for all the work you do — saving lives, making people healthy again, and giving kids and families so much hope.

God bless you, God bless the work you will continue to do, and may God continue to bless the United States of America.

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