Cancer patients are desperate to get the government to fix chemo drug supply shortage

(WXYZ) - Cancer patients are now fighting for more than just their lives – they're battling to get their medicine.

There's a critical shortage of chemotherapy medications in the United States right now - and a big part of the problem is many of the tried and true chemo drugs are just not profitable.

"I think the hardest thing about it all was when I had to tell my kids," said Cathy Moorman.

It was tough enough for Moorman to reveal to her family that she was diagnosed with Stage 4 colon cancer which had spread to her liver. Now this mother of two from Ypsilanti is facing an even scarier battle: Moorman recently found out her life-saving chemotherapy medication soon may not be available.

"That was pretty devastating because the drugs have been working – the tumors in my liver have been shrinking, tremendously," Moorman told Action News Investigator Heather Catallo.

Moorman says after the nurse at her chemotherapy center told her about the national shortage of several cancer drugs – she started doing some research online – and she was shocked.

According to the Food and Drug Administration, 199 drugs are currently in short supply. 16 of those are used to treat cancer.

"I was very discouraged to think that something like that could happen in this day and age," said Moorman.

"There's no requirement that companies let us know about a shortage for the most part, so that's been a problem," said Captain Valerie Jensen, the Associate Director for the FDA's Drug Shortage Program.

Another problem: Capt. Jensen says FDA inspections have turned up quality issues with several of the companies that make chemo drugs.

When a production line shuts down – it has a ripple effect on supplies across the country.

Some manufacturers are having trouble getting raw materials – but for other companies it's a business decision to stop making older generic injectable chemo drugs.

"These drugs are not making as much money as a newer agent, and so unfortunately, we see fewer firms making them," said Capt. Jensen.

Drugs like Doxil for breast cancer and leukemia, 5FU for colon cancer, and Cyterabine to treat leukemia are all in short supply.

"You have people who have acute leukemia, especially children where we can cure 70 to 80% of the children, and the two drugs we use are both in short supply and on the shortage list. That seems completely unacceptable to me," said Dr. Ezekiel Emanuel.

Dr. Emanuel is a former White House adviser, oncologist and he's now the Chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania. Dr. Emanuel told us that the U.S. needs to allow generic chemo drug prices to rise so companies will continue to make them.

"They're relatively easy to manufacture, we've been doing it for years, and the fact that they're so cheap provides little incentive to produce them, even though they're life saving… On the other hand we have a lot of drugs that prolong life for a few months, they're on patents, and people are charging $80-90,000 for them, and they don't cure anybody. That just seems to me we've got the system all backwards, and upside down. And that, I think, is a tragedy."

Dr. Michael Link, President of the American Society of Clinical Oncology, called the chemo drug shortage "critical" and said some patients are definitely at risk due to the shortages. Dr. Link tells Action News, in some areas, a "gray market" has cropped up in response to chemo drugs being in short supply: drug distributors have been selling some medications at 100 to 1000 times the normal price.

"They're playing with people's lives. And that's just not right," said Moorman.

What's worse – there is no quick fix. Congress is looking at legislation that would require manufacturers to alert the FDA if they're going to stop making a drug or if a shortage is on the horizon. Other solutions being discussed at the national level include creating a government stockpile of chemo drugs in case of severe shortages, and the FDA has been working with overseas suppliers to get more medications.

"For those of us who are involved in health care, it's a constant battle,"said Steven Smith, Director of Pharmacy Services for Karmanos Cancer Center.

Smith says his staff is constantly monitoring websites to find out which cancer drugs are in short supply… and then alert the doctors immediately.

"We identify patients who are currently on the therapy to make sure that we have enough drug to complete those therapies. And then as new patients come in, we work with them to make sure they have enough drug," said Smith.

Karmanos won't start a patient on a chemo drug if Smith and his team can't set aside enough of the medication before therapy starts.

"Switching horses in the middle of treatment is difficult, and it may not provide the patient with the very best care," said Smith.

If Cathy Moorman's doctor can't find her chemo medication for her remaining treatments – she could take a different drug – but not without

some serious side effects. What she really wants is for Congress and the drug companies to fix this problem before it's too late.

"I guess I would say to anyone who's in the decision making process that's in the drug companies, what if it was your family member? What if it was you? What would you do then," Moorman asked tearfully.

The FDA will be releasing a report soon with recommendations on how to fix this national problem… and we've learned a congressional hearing on this issue is scheduled for next week. Doctors don't want patients to panic – they say the most important thing you can do is communicate with your physician about your care.

For the FDA drug shortage list, click here:

Cathy Moorman's family created a special Facebook page where you can contact Michigan's Congressional leaders to express concern over the chemo shortages – click here if you want to access that .

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