You May Not Be Getting the Chemo You Need and Your Doctor Isn’t Telling You About It

Many chemo drugs are being rationed and some of those who need them aren’t getting them.

Some of the doctors aren’t telling their patients about the problem, according to a recent article in the New York Times. Welcome to the “ignorance is bliss” world of modern medicine. The article discusses the shortages of many types of drugs, including chemotherapy drugs, which creates the need to ration them. I used a couple of the drugs mentioned in the article.

A survey of oncologists conducted in 2012 and 2013 showed that,

  • 83% of those who regularly prescribed cancer drugs reported having been unable to provide the preferred drug at least once during the prior six months
  • More than a third of them stated they delayed treatment (which could make treatment more difficult) “and make difficult choices about which patients to exclude,” according to a letter published in The New England Journal of Medicine.

    Rodney Warner
    Rodney Warner

More than 150 drugs are on the American Society of Health-System Pharmacists’ list of drugs that have an inadequate supply. Reasons range from manufacturing problems to regulators ceasing or slowing production due to manufacturing concerns to drug makers ceasing production of low-profit drugs. Shortages get in the press once in a while but the rationing of these drugs has been largely hidden from patients and the public.

At hospitals across the nation decisions as to who gets what drugs are often being made in ad hoc ways resulting in contradictory conclusions, murky ethical reasoning and medically questionable practices reports The Times, according to interviews with doctors, hospital officials and government regulators.

  • Some institutions have committees including ethicists and patient representatives,
  • Sometimes individual physicians, pharmacists and even drug company executives decide.

The article cites the Cleveland Clinic as one example of a hospital addressing the issue. One scarce drug treats leukemia, daunorubicin, and another is methotrexate, which I used as part of my allogeneic bone marrow transplant.

  • Daunorubicin was saved for use in clinical trials so results wouldn’t be invalidated by using another drug.
  • Methotrexate wasn’t used by pediatricians for all patients who needed high doses, including those in research trials.

Other actions that were taken concerned overweight patients, who should’ve gotten an extra dose of a drug, only to receive a standard dose. Some hospitals prioritize use based on age with younger patients getting scarce drugs while adults didn’t get any.

This rationing impacts patients.

  • Due to the lack of some drugs patients will feel more pain or suffer more nausea.
  • Instead of using chemo to shrink tumors surgery may be used to try to remove them.
  • Studies have shown that the use of alternative treatments due to drug shortages results in increased rates of medication errors, side effects, disease progression and death. Children with Hodgkin’s lymphoma treated with a substitute instead of the preferred drug had a higher rate of relapse.

Though switching from one drug to another often doesn’t cause problems, but it’s difficult to track whether there is some adverse impact to the patient and it’s difficult to determine if the cause is the alternate drug or something else.

According to The Times, doctors and hospitals often won’t tell patients about shortages and the increased chances of disease progression or side effects because, being the paternalistic people that they are,

  • They don’t want patients to worry, especially if there are alternative drugs, or
  • They feel patients might get angry (and we wouldn’t want that, would we).

Patients at the Mayo Clinic were surveyed about their preferences when it came to rationing disclosure.

  • Most wanted to know about a drug shortage that might impact their care during elective surgery, even if there would only be a minor difference in possible side effects. Many stated they would prefer to delay surgery to get access to the drug.
  • The study was published last year in the journal Anesthesia and Analgesia. An accompanying editorial stated shortages should be discussed with patients. “Patients want to know and they should know,” the editorial said. “There is no ethical ambiguity.”

Issues leading to the shortages include,

  • If a drug has only one manufacturer, production or safety problems at its plant can have big effects on supply,
  • Another company might start to make the drug if that’s approved by regulators and if the company has the manufacturing capability and economic incentives,
  • The availability of a drug can depend on the patient’s location and how good his or her hospital is at finding (and hoarding) a scarce drug, and
  • Whether a patient has access to a major medical center which may be able to produce its own version of the drug.

How drug producers handle shortages vary.

  • Janssen rationed Doxil, an ovarian cancer and multiple myeloma drug (but was one that I used for relapsed Hodgkin’s lymphoma), on a first-come-first-served basis during a prolonged shortage.
  • Merck, the maker of BCG, a therapy for bladder cancer, fills requests from a waiting list in the order received and leaves rationing decisions to doctors.
  • Jazz Pharmaceuticals consulted a small group of oncologists to recommend how to allocate its leukemia drug, Erwinase, if it ever becomes necessary.

The Times reports the differences in distribution based on geography, diagnosis and age and the resulting inconsistencies in rationing have led to calls for change.

  • Some doctors have suggested starting a clearinghouse of scarce drugs and voluntary sharing to promote equitable access for patients.
  • Others want to create a registry of patients given nonstandard treatments so their results can be tracked.
  • Federal health officials in charge of emergency preparedness and response claim they are working to encourage hospitals to conserve and substitute drugs to avoid a crisis and try to fill gaps in manufacturing.

Whatever the causes of drug shortages there’s no reason this issue shouldn’t be discussed more and more publically. A huge portion of the population regularly use pharmaceuticals. If changes need to be made in how drugs are made, distributed and prescribed we should all know about it and we patients should play a major role in how these problems are addressed. Doctors and hospitals should treat their patients with respect (just like they say they do in their advertisements) and honesty. If we can’t have the best treatment possible we should know about it along with an explanation why. A problem that no one discusses will never be solved.

Disclaimer: Views expressed are those of the author or other attributed individual and do not necessarily represent the official opinion of the OncoLink Staff, University of Pennsylvania Health System (Penn Medicine), or the University of Pennsylvania, unless explicitly stated with the authority to do so.

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