The Major Ethical Dilemma Behind Rare Disease Drug Costs and a Bioethicist’s Solution

Avraham Steinberg recently spoke at RARE2019, the 2nd International Congress on Advanced Treatments in Rare Diseases. It was held on March 4th and 5th in Vienna, Austria. His talk focused on the ethical dilemmas surrounding rare diseases and their treatment.

Avraham Steinberg

Who is Avraham Steinberg? He is a 71-year-old pediatric neurologist from Israel. He is the Co-Chair of the nation’s National Bioethics Council as well as a professor at the Hebrew University-Hadassah Medical School where he teaches medical ethics. Steinberg is also a Talmudic scholar himself at the Shaare Zedek Medical Center. Specifically, he specializes in faith-based bioethics, as indicated by his published Encyclopedia of Jewish Medical Ethics which is seven volumes long. This set of encyclopedias earned the Israel Prize in 1999. In addition to all of these achievements, he is also an Orthodox Rabbi.

Ethical Dilemmas in Rare Diseases

There are an innumerable amount of ethical dilemmas within the healthcare field. These revolve around abortion, the right to die, vaccinations, and a multitude of other debates. In fact, practically every advance in the healthcare system has its own associated moral dilemmas.

However, when we think about the ethical issues that affect society as a whole, problems dealing with financial burdens seem to always come to the forefront. In the medical sphere, this most frequently revolves around equitable distribution of treatments. The most prominent issue of all seems to stem from rare disease treatments. Since these therapies are created for small populations, they cost a lot to produce. Since they cost a lot to produce, drug developers believe their outrageous price tags are warranted.

For instance, treatments for Batten Disease or Spinal Muscular Atrophy cost approximately 700,000 dollars each year per patient.

In the grand scheme of the world, this is a relatively new problem. Rare disease treatments as a whole are a fairly new phenomenon. Many novel therapies for rare conditions are just now coming into development. While we still have a very long way to go, many patients living with rare diseases are living long, prosperous lives when just a few years ago they would have certainly died.

Now, instead of worrying about survival, these individuals are forced to worry about the cost of their treatment.


Steinberg explains that ideally, every individual would receive the treatment they need and deserve, no questions asked. But unfortunately, in our society, this type of system would mean the overall level of care of every patient would be reduced. That said, every person still deserves phenomenal care.

Currently, the world’s system of healthcare does not adequately care for the populations of patients that are small and unfortunately, they do not have the political power or large lobbies to fight for themselves. These small populations still deserve treatment. Steinberg contends that our ethical obligations do not change for these populations simply because their medical treatments are expensive. However, he likewise states that we also cannot justify ceasing treatment for the majority in times when resources are scarce to support these individuals.

So, in situations like such, what do we choose?

The Ultimate Decision

What if it’s not actually about choosing at all? If we simply reduce the cost of rare disease treatments we eliminate the ethical dilemma all together.

The problem is, we’re not going to get drug developers to reduce their costs just because. Ultimately, their goal is to make money and they’ve built up a great deal of power to do so.

Steinberg suggests that governments offer pharmaceutical companies tax breaks, extended patent protection, and an overall faster approval process. These could all reduce the cost of their treatments when they come to market. He also explains that governments could allocate funds specifically for rare disease research through legislation.

Steinberg urges pharmaceutical companies to take a step back and consider their moral obligation. It is not just a business, it has a real effect on human lives. He says there are other ways to make money. Business should not come at the expense of a patient living with a rare disease.

You can read more about Steinberg’s perspective on this issue here.

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