When illness strikes, these advisors are ready to help

Imagine stepping off a plane in a foreign country, where all around the signs are written in a language you don’t understand and you can’t find a single person who speaks English. That sense of cluelessness, that feeling of literally being lost with nowhere to turn for guidance, is just a taste of one of the many terrifying aspects of being diagnosed with a serious illness. Drawn into a frightening whirlwind of unfamiliar terminology and medical complexities, none of the previous life experiences of a newly-diagnosed patient can help — and making the wrong decision can mean the difference between life and death.

And so, over the past few decades, both private askanim and medical referral agencies have become available to deal with medical-related issues of nearly every kind, often working around the clock to make sure people get the help they need. Over time, it became clear that the very first order of business in every health-related journey was finding the right direction and the best treatment protocol in often unchartered waters. And now, living in the shadow of coronavirus, this help is more important than ever

AT A PREMIUM

By Sandy Eller

Over two decades ago, when Williamsburg resident Reb Herschel Kohn saw how people in the Jewish community were being bankrupted by medical bills that could have been covered if only they had had the right insurance, Reb Herschel created Rofeh Cholim Cancer Society (RCCS) to help people pay their insurance premiums and make quality medical care affordable for every Yid. But it didn’t end there. It soon became clear that people didn’t just need help paying for treatment, they also needed qualified individuals to help steer them towards a treatment plan that was best suited to their particular needs.

“We became one-stop shopping for cancer patients,” explains Rabbi Chaim Rapfogel, chief operating officer at RCCS. “The same way you think of Hatzolah for medical emergencies and Chaverim when your car breaks down, RCCS is ready to step in and work out all of the medical and financial problems when someone has cancer.

“Doctors go to medical school because they want to help people, but then they get out in the real world and realize they can’t help everyone because of the realities of insurance,” he observes. “When they see that we can manage the insurance part of the equation, they’re excited to work with us — even if we get them while they’re on vacation on a beach in Hawaii.”

Rabbi Rapfogel recalls an incident he heard about from Reb Herschel Kohn, when two men were sitting together at a wedding, one of whom seemed depressed. When asked to explain his dark mood, the man said that his young son had been diagnosed with cancer and was scheduled to have his leg amputated.

“The other man pulled out his phone and called the RCCS emergency hotline from the wedding,” says Rabbi Rapfogel. “After hearing the details of the son’s cancer, RCCS advised the man to hold off on the surgery and assembled a new team of doctors for his son, and also helped him with the financial arrangements. Two years later, Reb Herschel got a bar mitzvah invitation in the mail with a little note attached clearly written by a young person. The note read, ‘Please come to my bar mitzvah and watch me dance with my two legs.’”

Having a solid medical system behind the patient is vital, but having a good advocate with extensive knowledge is an incredible service, and that point has unfortunately been illustrated over the last few months, as coronavirus has seen some people afraid to go to the hospital, while others have pushed off or neglected crucial treatments. Every hint to an assortment of illnesses, from headaches to chest pains to bad coughs, was blamed on coronavirus.

Two recent patients who were ultimately diagnosed with lung cancer originally attributed their bad coughs to coronavirus. In one of those cases, the window of opportunity for a cure is very narrow and the diagnosis was made in the nick of time. Another man who had headaches for weeks mistakenly assumed that COVID was to blame, only to discover several weeks later that he had an aggressive brain tumor. And when a leukemia patient was refused admittance by a major hospital because of the pandemic, the agency’s medical advocates understood that waiting was not an option and arranged for him to go to a smaller facility.

“The past few months have made it abundantly clear just how important it is to turn to those who understand the inner workings of the medical world in order to help navigate the maze and not make assumptions,” says Rabbi Rapfogel.

A patient may have no clue what to make of some symptoms, and a primary care physician might not connect the dots on symptoms that seem negligible. “We can help the patient find the best person to talk to, gather reports and understand what is going on, what the concerns might be and what the best approach would be at that point,” says Zishe Lowy, RCCS’s director of patient services, who handles referrals in the United States and in Israel.

Because RCCS focuses exclusively on cancer patients, its referral team specializes in treatments options. “Being in medical referrals used to mean knowing the experts and having relationships with them so you could get patients in,” says Lowy. “Now it’s also about understanding the diseases and how they’re categorized and even sub-categorized. We need that knowledge in order to be able to keep up and to know who has clinical trials available.”

Three years ago, one of the highlights of the annual American Society of Clinical Oncology conference in Chicago was a clinical trial for a specific type of mutation found in several types of cancer. “There were only 83 patients in the world who fit that criteria and could participate in that trial,” says Lowy. “We had three or four of them and we knew that in their cases it would be an absolute breakthrough.”

The organization’s expertise in working with insurance companies, which includes an advocacy department for approval of doctors in particular networks, as well as an appeals process, adds additional clout when it comes to getting top doctors on board.

“Doctors we work with know they have to offer our patients the best options because there is no excuse that something wasn’t approved by the insurance,” Lowy explains. “Doctors tell us all the time, ‘we know that when you guys are involved, there’s no room for a Plan B — it always has to be Plan A with you.’”