When Benjamin Raskin-Gross, now 13, was born, his mother knew something was wrong. But the doctor picked up the baby and told her, “This is a perfectly normal newborn,” and sent them home from the hospital.
The next day Julie Raskin took Ben to their pediatrician, and from there straight to the Neonatal Intensive Care Unit at Saint Barnabas Medical Center in Livingston. Within 10 days, Ben was diagnosed with congenital hyperinsulinism, or HI, a rare disease that disproportionately affects certain groups, including Ashkenazi Jews.
Congenital HI causes low blood sugar in infants and children and can result in brain damage. Until the third grade, Ben had 24-hour nursing care. He’s had three surgeries, and plenty of expensive medication and medical equipment. He has severe visual impairment and motor coordination issues.
The hypoglycemia dissipated a few years ago, but he now has symptoms typical of diabetes; otherwise he is a fairly independent teenager.
His mother describes him as “really vigorous and energetic” with a love for learning, writing, hiking, talking, and acting. He attends Glen Ridge High School, where he is in the eighth grade. (The school includes middle school grades.)
When Raskin considers the current health-care debate, she has a lot of opinions, most informed by her experience in a system that simultaneously offers top-notch care (for those who can afford it), rising costs, and a mountain of paperwork, red tape, and billing nightmares.
But at the top of her health care agenda is the necessity of screening newborns for rare diseases. If Ben had been screened as a newborn, “to check the blood sugar that day, or the next day, this might not have happened,” she said
Raskin said she believes it’s a cost issue. “Insurance companies would rather pay for the million-dollar mistake that’s one in 50,000 births than screen every newborn,” she said. As a founder of HI International, an organization to help families struggling with the disease, she said routine screening “is something we’re working on.”
She would also like to see genetic testing for Congenital HI included among other such tests that are prevalent among certain ethnic groups. She and her husband, Mark Gross, were screened for Jewish diseases, but HI was not included.
On a recent Sunday, while Ben attended a bar mitzva party at the Powerhouse Studio in East Hanover, NJJN met with his mother at a nearby diner to discuss the impact of his health care on her family’s life and her thoughts on the current health-care reform debate.
Throughout the meeting, she kept her cell phone on the table, careful not to miss a call from Ben, who might need help monitoring his glucose levels, or a quick slurp from a juice box should it drop too low.
Among her biggest frustrations as a health care consumer is having to resubmit claims to insurance companies after they’ve been wrongly denied.
“We had so many medical bills,” she said. “Keeping track of them all and making sure they were properly coded so we would not be charged and the insurance company would be charged was a big focus. Often I remember being so aggravated because bills would come and there we were in the hospital trying to take care of our son, and before you knew it a collection agent would be calling about something stupid like $100.”
It’s an issue most people are familiar with — but perhaps not on the same scale as Raskin is. Ben has regular appointments with an endocrinologist, an ophthalmologist, a low-vision optometrist, a neurologist, a gastroenterologist, a pediatrician, and a nutritionist, as well as an occupational therapist.
And that is in addition to various expensive medications and medical equipment that Ben needed — for years one of the medications he took cost $150 a day. And then there was the 24-hour nursing service he required until third grade to monitor crucial blood sugar levels. That kind of care would have cost the family $500,000 a year if it weren’t covered.
By her own admission Raskin has always had “excellent” insurance plans that have covered nearly everything they have needed, from the specialists at the Children’s Hospital of Philadelphia to the local doctors she sees regularly. She described her experience as “amazingly fantastic.” She knows that isn’t the norm, however, and calls herself “lucky.”
She attributes that luck in large part to the family’s relative affluence. She was on the professional staff of the Center for War, Peace, and the News Media, a think tank at New York University’s Department of Journalism, when she decided that her baby son and his older sister Hannah, now 15, needed her at home. At that time, Raskin’s husband was in charge of international human resources at Lehman Brothers. Being at home allowed her to spend the time needed to get educated about Ben’s condition and access whatever health care she decided he needed.
“We never had that feeling that we might be wiped out by this,” she said. She did worry, however, what would happen when her COBRA insurance from NYU — which was covering the 24-hour nursing care — ran out. But again, they were fortunate. When Mark approached Lehman Brothers, the company altered their policy to accommodate the family’s needs.
Changing the system
Despite all, Raskin believes the system must change. She said she would like to see a system “that won’t wipe out families” facing the same situation. Among the sweeping new regulations Congress is mulling for private health insurers, she supports those that guarantee coverage for people with preexisting conditions. “Obviously for us that is an enormous issue because Ben will always have one,” she said.
She said she wants a system that doesn’t allow insurance companies to place a cap on what they have to pay if an insured client gets sick.
Raskin added that she wants a system that provides “quality healthcare regardless of income level.”
To ease the frustration she has faced with bills and coding, she would also like to see a system that uses an ATM model — a health care “credit card” that would cut out paperwork. “I would like for people not to be so burdened managing health care bills,” she said. “It takes lot of time, and it takes a lot of effort. And it wastes millions of dollars.”
She worries about ever-rising premiums, and said that without change, costs will continue to rise until health care is unaffordable.
The model Raskin embraces, she said, would offer doctors a salary, with a bonus for total wellness, instead of fee for service, the prevailing model today.
“Doctors make more money if they sell more services. And Americans as consumers are used to wanting to consume as much as they can. When you put these together, we find that people are using services they don’t need and are even bad for them,” she said.
Raskin doesn’t believe the current debate is addressing the rising costs of health care sufficiently, and she’s cynical about the political process.
“It’s not about providing Americans with the highest quality health care, but about winning a political fight,” she said. On this count, she places equal blame on Republicans trying to keep President Obama from scoring a legislative victory, and on politicians in both parties who are indebted to pharmaceutical industries, or those who are simply “posturing.”
As for a single-payer insurance plan, Raskin supports it in theory, but suggested it is “politically impossible.” Similarly, she likes the idea of a public option, but predicts it will never fly politically, except for those without insurance altogether.
Meanwhile, Ben has called from the party not once, not twice, but three times. He and his mother discuss how many carbs he is eating, how much he is dancing, and whether or not he needs some juice.
And it is clear from her smile as she says, “Bye, Ben,” that Raskin is simply thrilled he’s doing something as basic to teenagers as having fun at a bar mitzva party.