It’s a situation you might expect to find in war-torn countries or those with chronically poor medical care. A shortage of saline solution and IV nutrition fluids for sick and injured children and adults. Unavailability of the most effective cancer chemotherapies for leukemia and bladder cancer. No supply of aminocaproic acid, a drug effective for preventing bleeding during open heart surgery.

Incredibly, it's happening - and been happening - right here at home, and at some of the premier medical centers in the U.S. And often, the patient has no idea he or she is the victim of a drug shortage and receiving suboptimal care.

The serious and growing drug shortages in the United States were detailed recently in a Government Accountability Office report. GAO called on the FDA to make better use of the data it’s been collecting from Title X of the Food and Drug Safety and Innovation Act of 2012, which requires manufacturers of drugs that are “life-supporting, life-sustaining, prevent or treat a debilitating disease or condition, or are used for emergency medical care or during surgery” to report to the FDA when they experience a interruption in manufacturing or discontinue a drug. Currently there are inadequate supplies of more than 150 drugs and other therapies, according to the American Society of Health-System Pharmacists.

Lifesaving-Drug Shortages in the ER

The problem is ongoing. A study of University of Utah Drug Information Service from January 2001 to March 2014 found that 321 drugs used in emergency rooms were in short supply, with more than 52% of those drug used for “lifesaving interventions or for high-acuity conditions.” For 10% of these drugs there were no available substitutes. Drugs for infectious diseases were most common among ER shortages; drug antidotes, heparin and nitroglycerin, have recently been affected by national drug shortages. “In addition, not having commonly used medications to treat everyday conditions, such as prochlorperazine for headache and nausea, can lead emergency physicians (EPs) to choose other less effective medications or use more expensive alternatives,” the Utah study reported.

Penetrating looks at how doctors, pharmacists, and hospitals are dealing with shortages have been published recently by Fortune, the Wall Street Journal, and the New York Times. But less has been written on how patients can find out about drug shortages that affect their care, and even more important what, if anything, they can do about it.

“You need to be your own best advocate,” C. Michael White, Pharm.D., co-director of University of Connecticut’s Evidence-based Practice Center, told Investopedia. “I believe patients should know the treatment options with their good and bad points and be a part of the decision about which drug, procedure, surgery, or device to use. That includes letting people know if a great option is not available.”

It's Complicated, But Follow the Money

Drug shortages have existed since drugs began to be manufactured but a number of factors have exacerbated problems in recent years. For example, in response to contamination problems in drugs produced for the U.S. by overseas plants, the FDA has expanded its jurisdiction and inspections of overseas plants. Some drug shortages are caused by contamination or manufacturing problems that shut down production. Disruptions in production particularly affects generic drugs because of the low number of manufacturers and lack of surplus capacity.

And profit (or lack of it) is a major issue. “Drug shortages are almost uniquely associated with generic drugs (small profit margins) and rarely with patented drugs (large profit margins),” according to an analysis in the American Society of Clinical Oncology. Older drugs that have gone generic are reimbursed at a low rate by Medicare and other insurers.

A Role for Patient Advocacy – and Protest

Sometimes there is a shortage of a generic and insurers won’t pay for the brand name drug because it’s much more expensive. “This is an area where patients’ protests to insurers could change things,Lisa Holle, Pharm.D., health policy chair of the Hematology/Oncology Pharmacy Association (HOPA) told Investopedia, though she feels it’s an issue patients should not have to worry about.

Other factors implicated in drug and supply shortages include stockpiling of drugs thought to be in short supply and business issues, which according to PhRMA, the drug industry association, include “changes in hospital and pharmacy contractual relationships with suppliers and wholesalers, wholesaler and pharmacy inventory practices,” and “individual company decisions to discontinue specific medicines.”

It’s interesting to note that in European countries, where generic drug prices are higher, many of these drug shortages do not occur. Suggestions for preventing shortages in the U.S. include national stockpiles to ensure basic supplies and better incentives for generic drug manufacturers to expand capacity by higher reimbursement or exclusive rights to produce certain drugs. (You may also be interested in Zika Vacine: How Long Do We Have To Wait?)

Your Right To Know

Doctors and institutions may avoid telling patients about shortages, substitutions of less effective medicines, and even missing nutritional factors in their IV fluids.

Yet even though it might worry them, patients do want to know if there’s an issue with their therapy. A large majority (76%) of 949 Mayo Clinic patients surveyed said they wanted to be informed about drug shortages that might affect their care.

Dr. Holle, of HOPA and the University of Connecticut School of Pharmacy, agrees that patients have the right to know if their therapy is being altered. “If the patient can’t get the most effective or safest treatment, there needs to be a discussion about alternatives. I wouldn’t recommend patients shop around for other providers because switching may delay or complicate patient care. Often hospitals will work with one another to help supply the patient with a drug.”

The Bottom Line

If you’re at an emergency room, heading for surgery, or receiving cancer treatment, it may pay to ask your doctor directly to let you know if drug or supply shortages are affecting your care. You can check the current list of shortages for your treatments. If you and your provider feel that available substitute drugs are less safe or effective, work with him or her to see if the medication can obtained from another hospital or if you can appeal to your insurer to pay for a more expensive drug when a cheaper one isn’t available. If the shortage is pervasive and hospitals or providers are rationing use, ask about the criteria for choosing patients who will receive it and consider appealing the decision. If you search for your treatment online, be aware that scam offers and counterfeit drugs may abound.

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