In First, Israel's Drug Panel to Get Input From Patients This Year

Patients asked to submit their impressions of drugs and technologies to health basket committee as part of pilot project

The health basket committee holds a discussion on September 1, 2019.
Emil Salman

The discussions by the health basket committee for 2020 opened Sunday, under the same pressures as every year to make particularly expensive drugs and technologies eligible for government subsidies. This year there will also be input from patients themselves.

The 21-member committee, headed by Hadassah-University Hospital director Prof. Zeev Rothstein, will have to sift through a record 900 new drugs and technologies to decide which to include. Most of the proposals are for cancer drugs, along with those to treat rare diseases and syndromes.

For the first time, patients are being asked to submit their impressions and document their experiences with treatments that are candidates for inclusion. As part of this pilot project, patients are asked eight leading questions about both physical and emotional side effects, impact of the drug or technology on their quality of life, the frequency of hospitalization or doctors’ consultations, and other socioeconomic consequences.

Around 50 patients have already made reports through the committee’s web page on the Health Ministry website, and anyone interested in submitting testimony is invited to do so. This information will be presented to the committee alongside the results of clinical research, recommendations by physicians’ associations and other relevant information.

This represents somewhat of a change, as over the years committee members have done their best to avoid external influences on their deliberations, including emotional appeals by various groups of patients or by individuals. The committee had always relied primarily on clinical studies and not on anecdotal evidence, so as to make the most objective decision possible.

Tal Morgenstern, director of the technological assessment branch for the health basket, who is leading the public input pilot, said that while the panel prefers to rely on hard facts to set its priorities, the committee was never comprised solely of medical professionals. “Those who established the committee two decades ago believed that to make decisions one must also relate to social, ethical, legal and financial aspects,” she said.

“Over the years we noticed that there was very little representation of the patient experience while working on the basket, compared to the clinical data,” she said, adding that this complaint was often voiced by patients who initiated contact with either the Health Ministry or individual members of the committee. “There are a lot of things that only a patient can explain and that a doctor can’t always elicit from him properly. So this is another level in the array of considerations that completes the picture,” Morgenstern said.

This will be a particularly challenging year for the committee. Among the drugs it is being asked to consider is Zolgensma, a breakthrough one-off treatment for spinal muscular atrophy in children under two years old, and which costs 7.5 million shekels ($2.1 million) per patient, making it the most expensive drug in the world right now. The committee will also debate including Luxturna, an individualized gene-therapy treatment for inherited retinal disease – a genetic eye disease that leads to blindness. It cost around 4 million shekels per patient. Luxturna was proposed for inclusion last year, but it was not approved.

In general those drugs that will feature most prominently in the committee hearings will be those that were left out last year due to their cost. The panel will deal extensively with drugs that intervene in the immune system to fight cancer. This group includes, among others, Keytruda, Opdivo, and Tecentriq, which are drugs to help cancer patients whose tumors have metastasized and who are suffering from head, neck, lung, skin, and kidney cancer, as well as cancerous growths in the digestive system, liver and pancreas. These drugs are administered under differing circumstances, sometimes as treatment in the first instance and sometimes at more advanced stages.

Technologies the committee will consider include low-level CT scans for heavy smokers as a means of early detection of lung cancer, and a technology for early detection of skin cancer through a computerized scan of suspicious moles. The panel will also consider public funds for glasses for children under age eight; funding for contraception, like hormones and condoms, with a low copayment and increasing the number of physical therapy sessions for the chronically ill.