The Rising Price of Prescription Medicine Disproportionately Affects Rare Disease Patients

It may not be surprising news to find that the United States now pays more for prescription drugs than any other high-income country. This was not always the case however. Read the source article at

In the 1980’s there were at least a few other countries that spent the same amount on prescription drugs, but prices grew in the 1990’s and put the US at the top for prescription drug prices. This may be due in part to the fact that several specialty drugs were released in the 90’s and the US does not have price controls on drugs like other countries such as Europe.

And while the price of medicine can make any American shudder, it is usually medicines used to treat rare diseases that hold the most expensive price tag.
Why are prices so high?
Rare disease patients understandably have serious concerns about the rising price of prescription medicine. Many people blame the high price tag on drugs being so expensive to make and get approved by the United States Food and Drug Administration. The pharmaceutical industry even holds a myth that companies take the money from the high prescription drugs and uses it to fund research and developing a new drug for the future. This is not necessarily the case, according to Dr. Jerry Avorn, who is a Harvard Medical School professor.

Dr. Avorn helped form a 2015 study that showed that the last few dozen “game changing” drugs were not done by pharmaceutical companies at all but by academic researchers who were federally funded. Therefore, having affordable drugs would not necessarily mean a decline in research and the reduction of new drugs.

GoodRX, a price-tracking website for drugs, ranked the most costly drugs for outpatients in 2017 and this is what they found for the top three. This is based on wholesale acquisition cost for a normal patient.

  1. Actimmune: Costs $52,321.80 per month

This medicine helps improve the immune system for patients with chronic granulomatous disease.

This rare genetic disease damages the immune system and impairs the body from being able to defend itself against infections. No more than 250,000 people in the world have this rare disease.

The maker of the drug says that there are many different factors that affect cost and that the average price is only $24,000 a month.

  1. Daraprim $45,000 per month
This medicine is for the treatment of toxoplasmosis, a common parasite. It only shows symptoms in those who have weak immune systems or pregnant women. Symptoms such as blindness, brain disease, and miscarriage may occur.

The price of the medicine rose from $13.50 a pill to a staggering $750.

One pharmaceutical investigator says that the money for the drug is creating funds for the creation of an updated version that is hopefully safer for patients.
  1. Cinryze: $44,140.64 per month
This medicine helps people who have a rare disease called hereditary angioedema which only 1 in 50,000 people have.
This rare disease can cause attacks of severe swelling that can occur on the face, intestinal tract, and airway and can be deadly.

A representative for this drug says the company uses the money to fund the development of new treatments for patients with rare conditions.

Have you noticed prices rising in your own treatment efforts?

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