As the popularity of the Republican tax reform legislation has surged, on Wednesday, NBC’s Today show found a new line of attack against the policy – it’s “cruel for families” who have children with rare diseases. That harsh conclusion was drawn based on the assumption that the reduction of a tax credit for pharmaceutical companies in the bill would automatically cause a shortage in medication and decline in research for such illnesses.
“One of the biggest accomplishments of the Trump administration has been sweeping tax reform,” co-host Savannah Guthrie acknowledged as she introduced the report. However, fellow co-host Hoda Kotb chimed in: “But some of the cuts that could come with it could leave certain families in need.”
The network’s Chief Foreign Correspondent Richard Engel, normally reporting from overseas, conducted the segment that followed, being the father of a child with a rare medical condition. “This is a story that hits very close to home for me. There are so many children with so-called rare diseases, including my own son, and there are many amazing doctors and researchers working toward treatments and cures,” Engel explained.
Taking a political turn, he warned: “But they need help, and for years and years there was an incentive, something that helped drive this research, but unfortunately, it’s just been reduced dramatically.” The headline on screen declared: “Taxing Issue for Families in Need; How New Plan is Impacting Rare Research.”
In addition to detailing his own son’s condition, Engel also profiled a family with multiple children suffering from rare ailments: “Becky and Joel Roman in Indiana know this all too well. They have six children, three biological and three adopted, all of them with so-called ‘orphan disorders.’” He pointed to “more than 7,000 disorders identified as ‘rare’ or ‘orphan,’ and 95% of them have no cures.”
Moments later, politics again came into play: “The Romans’ generosity is extraordinary, but these days, it isn’t matched by our government.”
National Organization for Rare Disorders chairman Peter Saltonstall lamented: “When they brought the new tax plan forward, in order to be able to accomplish all of the cuts that they wanted to make, they went looking for places where they could find savings already within the government.”
Engel added: “He says for 35 years drug companies could write off a significant portion of their research on orphan diseases, where there might not be enough patients to recoup the costs of a drug’s development.” Saltonstall continued: “Just recently, the Orphan Drug Tax Credit, in this last tax bill, was reduced from 50% tax credit to a 25% tax credit.”
The reporter proclaimed: “Some critics say the cut is simply cruel for families like the Romans, who fear companies will stop making the drugs their children are on, or stop looking for new ones that Brooks, our son Henry, and so many others badly need.”
It wasn’t until after making that statement, at the very end of the report, that Engel featured any response from supporters of the tax bill: “In a statement to NBC News, the House Ways and Means Committee said that because overall corporate taxes have been reduced so much, pharmaceutical companies will be able to invest more of their earnings, more of their profits to finding new solutions for patients.”
As the congressional statement pointed out, other provisions in the legislation could very well balance out the tax credit reductions. Not to mention the financial benefits many families have experienced that could help pay for medical bills.
Even Engel noted that “Doctors, however, say it could take months before we know how much the incentive cut is having an impact on the development of new treatments.”
Perhaps more information is needed before the legislation is denounced as “cruel.”
Here is a full transcript of the March 7 report:
8:41 AM ET
SAVANNAH GUTHRIE: One of the biggest accomplishments of the Trump administration has been sweeping tax reform.
HODA KOTB: But some of the cuts that could come with it could leave certain families in need. NBC’s Richard Engel explains. Hey, Richard.
RICHARD ENGEL: This is a story that hits very close to home for me. There are so many children with so-called rare diseases, including my own son, and there are many amazing doctors and researchers working toward treatments and cures. But they need help, and for years and years there was an incentive, something that helped drive this research, but unfortunately, it’s just been reduced dramatically.
[ON-SCREEN HEADLINE: Taxing Issue for Families in Need; How New Plan is Impacting Rare Research]
ENGEL: Like all parents with a special needs child, my wife Mary and I live on the hope that scientific research will find a cure.
It’s hard to tell how much he’s understanding.
Our 2-year-old son Henry has a variant of Rett Syndrome, a lifelong genetic disorder that severely limits him mentally and physically.
I mean, he wasn’t always sitting up this well. For us, it’s real progress.
Henry’s particular disorder is rare, but there are many children facing similar challenges. He has one of more than 7,000 disorders identified as “rare” or “orphan,” and 95% of them have no cures. Impacting, researchers say, 30 million Americans.
Becky and Joel Roman in Indiana know this all too well. They have six children, three biological and three adopted, all of them with so-called “orphan disorders.”
BECKY ROMAN: We say, like, this is our calling. This is what God has called us to do.
ENGEL: Hudson is six, he has Hunter’s Syndrome, he’s missing an enzyme critical for cell function.
BECKY ROMAN: He’s hilarious. Lots of energy.
ENGEL: Four-year-old Poppy has the even rarer Sly Syndrome, her body can’t metabolize sugar.
BECKY ROMAN: She’s little, but she’s mighty.
ENGEL: And Brooks, just three, has schizencephaly, a developmental brain disorder, and Down’s Syndrome.
JOEL ROMAN: He loves to pull all the attention in the world towards himself.
ENGEL: Poppy and Hudson are undergoing treatment. But even with it, Hudson’s condition is considered terminal. For Brooks, there’s no treatment at all. The Romans’ generosity is extraordinary, but these days, it isn’t matched by our government.
PETER SALTONSTALL [CHAIRMAN, NATIONAL ORGANIZATION FOR RARE DISORDERS]: When they brought the new tax plan forward, in order to be able to accomplish all of the cuts that they wanted to make, they went looking for places where they could find savings already within the government.
ENGEL: Peter Saltonstall is chairman of the National Organization for Rare Disorders. He says for 35 years drug companies could write off a significant portion of their research on orphan diseases, where there might not be enough patients to recoup the costs of a drug’s development.
SALTONSTALL: Just recently, the Orphan Drug Tax Credit, in this last tax bill, was reduced from 50% tax credit to a 25% tax credit.
ENGEL: With that incentive slashed in half, Emil Kakkis, CEO of a firm that specializes in rare disorders, says drug companies may focus more on common illnesses, which by definition have more customers.
EMIL KAKKIS [ULTRAGENYX FOUNDER AND CEO]: A reduction in the Orphan Drug Tax Credit clearly will have a decreased incentive in investment.
ENGEL: Some critics say the cut is simply cruel for families like the Romans, who fear companies will stop making the drugs their children are on, or stop looking for new ones that Brooks, our son Henry, and so many others badly need.
In a statement to NBC News, the House Ways and Means Committee said that because overall corporate taxes have been reduced so much, pharmaceutical companies will be able to invest more of their earnings, more of their profits to finding new solutions for patients. Doctors, however, say it could take months before we know how much the incentive cut is having an impact on the development of new treatments. Back to you.
KOTB: Alright, Richard, thank you so much.
