Agonizing and Exorbitant: The 'Super Drugs' That Couldn't Save My Father’s Life

The family of a health-care reporter for TheMarker, Haaretz's business publication, confronts the astronomical cost of potentially lifesaving immunotherapy treatment for cancer.

TheMarker health-care reporter Ronny Linder-Gantz with her parents Danny and Shoshi, in 1982.
Ofer Vaknin / from a family album

It was just a matter of time until the tough issues that I have been writing about for more than a decade would hit closer to home. In April 2014, my dad, Danny, contracted a fairly rare form of cancer with the frightening name of mesothelioma. It affects the lining of organs of the body, most commonly the lungs, and is caused by exposure to asbestos (a subject I have also dealt with quite a bit in my reporting).

But my father didn’t remember when, if at all, he had been exposed to asbestos. He also hadn’t smoked for more than 20 years, and in general was a happy and healthy man his entire life – the type who doesn’t go to the doctor more often than once every two or three years.

We knew that the prospects of Dad recovering were negligible, that the cancer had spread to such an extent that surgery wasn’t an option. We knew that he was facing a fatal illness and that under the best of circumstances, he had a year and a half to live.

After a few months of the standard treatment for mesothelioma – a combination of two chemotherapy drugs that have been in use for rather a long time – it appeared that the disease had been halted. Dad experienced almost no side effects. He was weaker than usual, but he continued to function, enjoying the grandchildren, meeting with friends, laughing and carrying on with life. We knew that it couldn’t last. That he had a serious illness and there was no other treatment down the line after the chemotherapy he was getting stopped working.

But like everyone, we were hoping for a miracle. In our heart of hearts, we took comfort in the possibility that the illness would be longer term and that there wouldn’t be a change in the very slow deterioration we saw from his initial CAT scans. But there was no miracle.

After a few months in which the disease slowly got worse, it became more virulent, progressing quickly. Dad stopped responding to treatment and the doctors had nothing to offer. And just then, when people usually throw up their hands and transition to palliative care (mostly focused on dealing with pain), medication entered the picture that have excited health-care systems around the world over past year: expensive immunotherapy drugs that are considered a breakthrough in the field of treating cancer, focusing on mobilizing the body’s immune system against the disease.

We again became a statistic, this time joining people who need a very expensive drug that is not covered by government health system for their particular disease, who don’t have private medical insurance and have no other way of obtaining the drug. There was no suitable drug on which clinical trials were being done and no philanthropic foundation to fund what my father was seeking.

The quest for the medication made the final weeks of my father’s life particularly difficult and tormenting, beyond the agony of the disease itself. The drug cost about 40,000 shekels (about $10,000) per treatment, and was supposed to be administered every three weeks. No one could say how many treatments to anticipate.

That was the bottom line when it came to what appeared then to be my father’s sole and last hope. That hope lay in Keytruda or Opdivo, both new-generation immunotherapy drugs.

Keytruda at any price

Prof. Tamar Yablonski-Peretz, the director of the Sharett Institute of Oncology at Hadassah University Hospital in Jerusalem,
Avi Hayun

The great excitement among patients, doctors and medical institutions around the Western world over immunotherapy drugs – which stimulate the immune system to attack malignant growths – is fairly new, surfacing not much more than two years ago. Just this month, for example, we learned about a new ground-breaking immunotherapy medication for acute lymphoblastic leukemia that made all symptoms disappear in 94 percent of patients in a clinical trial.

The most famous, recent example of a patient who has shown a remarkable recovery after being administered such a drug is 91-year-old former U.S. President Jimmy Carter, who was diagnosed with metastatic melanoma and publicly announced three months ago that the metastases in his brain had entirely disappeared after taking Keytruda, manufactured by Merck. There is no need to explain the impact of such a case on other cancer patients.

My mother told me that one day when she was in the hospital elevator, she heard a conversation between two doctors that bolstered her feeling that we needed to obtain Keytruda at any price. “I will never forget what one of them said to the other: ’Don’t say chemotherapy. From now on, say immunotherapy,’” my mother recounted. “That left a strong impression,” she added.

Although in the past there were any number of reports about very expensive cancer drugs in the news, they were nothing like this: On one hand, physicians have been glorifying these medications as a lifesaving breakthrough in treating various kinds of cancer, but the drugs are also so expensive that they are out of reach for most people.

Keytruda and Opdivo, made by Bristol-Myers Squibb, were included in the health basket here in January 2015, shortly after receiving approval from the U.S. Food and Drug Administration for use in the treatment of melanoma, a type of skin cancer. At the same time, it turned out that they had major potential to treat other kinds of cancer. Since then, they have been licensed to treat lung cancer and have turned the “cancer market” upside down (along with the older immunotherapy drug, Yervoy). The tumult has resulted from the fact that for patients who respond to these drugs, the reaction is considered dramatic in medical terms.

Baruch Liberman.
Tomer Appelbaum

“In the past, patients with metastatic melanoma were dead within half a year, and there were really no effective treatments for their disease,” said Tal Morgenstein, the director of the technology evaluation division at the Health Ministry. “All of a sudden, there are drugs that may only work for 20 to 40 percent of patients, but when there is a response, it’s dramatic. For example, when it comes to Yervoy, there are already data on patients who have survived for close to 10 years.”

And there are other immunotherapy drugs in the pharmaceutical companies’ pipelines, some of which are being developed by companies in Israel, including the biopharmaceutical company Kite Pharma.

Still, along with the exciting scientific discoveries, there is the cost of the immunotherapy drugs, which reach incomprehensible levels. The cost is ultimately dependent on the patient’s weight: With Keytruda, for example, the dose is 2 milligrams per kilo (2.2 pounds) of the patient’s weight, and 50 milligrams of it cost about 11,000 shekels (about $2,800). That means that a single treatment can run 44,000 shekels, while extended treatment can reach hundreds of thousands of shekels.

And the figures can go even higher: The drug “cocktail” that has been successful in eliminating tumors caused by metastatic melanoma (with tough side effects, it should be noted) has soared to the unbelievable average sum of more than 750,000 shekels for a full course of treatment, for a patient weighing 70 kilograms (154 pounds). Experts predict that in the future, the price will go even higher, perhaps even exceeding a million shekels for a course of treatment per patient, since it will begin to be administered earlier and for a longer period. As a practical matter, there are very few terminally ill cancer patients who have stopped responding to other treatments, who have not then heard from a doctor or other source about the highly expensive hope of immunotherapy.

Doubly cruel reality

Preliminary research as to the effectiveness of Keytruda in treating my father’s disease, mesothelioma, has shown hopeful results. Due to the similarity of mesothelioma and lung cancer, which responds well to immunotherapy, it was decided that we would launch an effort to raise the funds needed to get Keytruda, which had quickly become his last hope.

Amid the cruel reality of his horrible illness, we found ourselves facing another cruel reality in the form of the price tag per dose of Dad’s Keytruda, which based on his weight was 40,000 shekels, to be administered very three weeks. If the treatment were to fail, Dad would die. If it were successful, who knew how we would manage to keep raising such funds over time?

“Anyone who comes here takes out loans,” said Baruch Liberman, the director of the Friends for Health (Haverim le’Refuah in Hebrew) NGO, which provides assistance to patients with serious illness who need expensive treatments and medications. The group’s activities include raising funds for medication, and offering legal advice and support for patients in dealing with government authorities. Liberman explained that patients frequently express concern that the entire inheritance that they wanted to leave for their families will be wiped out and that all they will leave behind is debt. “People come to us who take out loans of 200,000 to 300,000 shekels from the bank,” Liberman added.

As with many other patients, my father’s case surfaced in an interim period – between initial clinical indications of the effectiveness of a specific drug and the stage at which it is approved for coverage by the state health-care system. One way or another, we were well aware that my dad would not have years or even months to live.

The money for the initial injections had to be paid immediately. He received two doses of Keytruda, which we paid for ourselves. He died after the second dose, at the age of 73 last August. My family did not face economic collapse because we used my mother’s retirement funds to cover the 80,000 shekels the treatments cost. If we had been fortunate enough to have my father live longer and get additional treatments, my parents would have had to sell property to meet the expenses.

It should be noted that the buzz over these “super drugs” is fed to a considerable extent by doctors and the media, who have been competing in recent months with one another in the superlatives they use to describe immunotherapy medications. There are physicians, however, who think it’s too early to call this a revolution.

“I would expect that, in their words of praise, doctors would also note that it won’t help everyone,” says Dr. Ra’anan Berger, who heads cancer center at the Sheba Medical Center, Tel Hashomer. “There is good news here. We are among the first in the world administering these sorts of drugs, and I am seeing a few patients whose disease has disappeared. But when an oncologist says immunotherapy is the only thing and that there is now no longer room for chemotherapy, he is at the same time discarding all of the other options. A huge number of people are alive among us currently thanks to chemotherapy.”

Even more explicit in his comments was Prof. Nathan Cherny, an oncologist at Jerusalem’s Shaare Zedek Medical Center. “They’ve called [these drugs] a great breakthrough, but in essence, what have we had here? Thirty-five percent of the patients stopped treatment due to side effects, and there are still no data on overall survival [i.e., in terms of life expectancy from the moment treatment begins or the disease is discovered], but rather just progression-free survival [without further progression of the disease], which is not a substitute for overall survival and quality of life.”

For her part, Prof. Tamar Yablonski-Peretz, the director of the Sharett Institute of Oncology at Hadassah University Hospital in Jerusalem, cautioned that the aim of treatment with immunotherapy must also be clear, including both the prospect that symptoms will disappear but also the possibility of false hopes: “I hear about too many people who really at the last moment, on the [patient’s] deathbed, buy one or two doses of these expensive drugs, and [the patient] dies. And then the family has peace of mind of sorts: At least they tried everything.”

People often don’t allow themselves to do less than that, she said, “but it’s emotional manipulation,” she said, adding that cancer patients at the end of their lives, as well as their families, are a vulnerable, sensitive group of people. “They will do anything to try. There’s always the thought of ‘maybe we will save our dad.’ It’s part of the unspoken language with cancer drugs.”