Israeli health basket debate: 'I have too many reasons to live'

The debate over which new drugs and technologies will be added is expected to last until late Tuesday night, and an announcement of the additions to the basket is expected to be made sometime Wednesday. 

Decisions about these additions are usually made by January 1, but this year, due to coronavirus and political turmoil, discussions on the addition were pushed off.

The budget this year is NIS 550,000 million, up from NIS 500,000 million the year before.

A team of around 35 medical personnel and other health officials are discussing some 185 new drugs and technologies valued at around NIS 2 billion. These are treatments for chronic and rare diseases, cancer, diabetes, lung disease, liver disease, mental health challenges, as well as for technologies that could be used for genetic screening or dental health.   

Last year, the committee approved the addition of a range of treatments for cancer patients, a nasal spray for treatment-resistant depression and an HIV prevention treatment, among other drugs and treatments. 

Of course, only some of the approximately 900 treatments valued at more than NIS 3.5 billion that were originally submitted for consideration by the committee made the cut. Similar to this year, a final around 141 items were on the final list. 

One person hoping to see a novel drug incorporated into the health basket is Sara Shoham, 54, from Ness Ziona. She was diagnosed with advanced stage scleroderma (also known as SSc-ILD) three years ago, a disease that causes her lungs to deteriorate and ultimately death.  

There is only one drug that has been known to effectively slow the deterioration of the lungs for people with the disease: Ofev. 

Shoham started taking it almost three years ago through a clinical trial. Soon, she will no longer be able to receive the drug through this means. Then, she told The Jerusalem Post, she will not be able to afford it. 

“I had pain in my joints, redness in my face and a lot of spots, like acne,” Shoham described when she first started suffering from scleroderma. Then, she started to cough. For nearly two years she was on and off antibiotics before she was diagnosed.

Today, she can barely walk her dog. However, Shoham said she loves life and is very grateful for what she has, including one granddaughter and another on the way. 

“The health funds cannot choose who should and should not die,” Shoham said. “It does not seem right. The fund should have enough for everyone. If it doesn’t, the government is putting money in the wrong places.”

She said, “I am not going to put my hands up and say, ‘I am going to die.’ I have too many reasons to live.”

Making such decisions is “very hard indeed,” said Prof. Mordechai Shani, a former Health Ministry director-general, who helped establish the committee for priority in health back in 1988. 

“The budget of NIS 550 million is very low,” he told the Post, noting that he is now a member of an activist group lobbying for patients rights to help effect change and increase the annual allotment for these innovative, new or unique treatments.

He said the dilemmas that the committee faces are huge and heavy.

“Eight percent of the population are diagnosed with rare diseases. It is a very big budget for just a few people,” he said.

This year, the committee is talking about whether the country should reduce the age of mammography from 50 to 40, if Israel should introduce molecular profiling for cancer patients and, if so, what would be the long-term effects. The proposal for this change was submitted by the One in Nine organization.

He said this is the first year in many in which there was a slight increase in budget and there is no promise that it won’t revert back to the lower amount next year. He said that the government has failed to prioritize the health system, as Israel saw quickly with the onset of the coronavirus crisis. 

Will the mirror that COVID-19 held up to the government change its priorities?

Shani said he does not believe that it will.