Promoting patient-centred healthcare around the world

1. Promoting patient-centred healthcare around the world Drug Shortages and Patient Impact Suzanne Nurse, PhD Co-Chair, Canadian Epilepsy Alliance Drug Shortages Committee Independent Member, Best Medicines Coalition International Summit on Medicines Shortage Toronto, Ontario, Canada 20-21 June 2013

2. Drug Shortages & Patient Impact • The Problem • Public Awareness • The Cause? • Need for Transparency • Importance of FIP Forum • Patient Engagement

3. The Problem Drug shortages are a globalproblemfromAfghanistan toZimbabwe Source: WHO, 2012 55%of Canadian pharmacists reported “drug shortages had a “significant” impact on patient care and outcomes” Source: CPhA, 2013 Respondent Experience with Drug Shortages: 20%No Shortage 50%Actual Shortage Source: JAMA, 2013 30%Near Miss Source: ISPE, 2013

4. Risk of a Catastrophic Drug Shortage • If this risk were a virus, we would be issuing public health warnings and desperately seeking a vaccine; • If this threat were looming storms, we would have evacuated residents along coastal areas; • If pending shortages were of beer this summer, every bar would have a contingency supplier…

5. Instead, it’s just shortages of essential medicines for cancer, epilepsy, infections, pain, surgery and other serious conditions. (So we’re hoping it won’t happen again, or if it does, the impact will be minimal).

6. WhyHasn’t the Public Been Informed? How many patients even know about drug shortages until they are … • Like Brian, who can’t get his prescription refilled at the pharmacist. And is then given three days’ supply followed by two weeks of medication and told to “cut it in half” because it’s the wrong dosage? • Like Jeff, who was told his daughter would need to delay the start of chemotherapy because the drug wasn’t available, and that there were other patients with priority?

7. Like Emily, who was suddenly told to purchase her anti-nausea medication at the local pharmacy because it was not going to available at the cancer clinic along with her chemotherapy? • Like Jessica who, in order to avoid switching her daughter’s epilepsy medication, counts herself lucky because she can “slip across the border” to get the prescription filled in a pharmacy in another country? And, of course, the public is mostly unaware about the shortages responsible for cancelled surgeries, reduced doses of pain medication, or delayed treatment of infectious conditions.

8. Lack of Investigation re: Causes of Shortages ? • Why are drug shortages most acute in countries like USA, Canada, and Australia? • Why is there less impact in Europe? • How are shortages affecting emerging economies? • Should patients expect shortages to continue? • Where and to what degree are shortages likely to occur in the future? • Why hasn’t there been a systematic investigation as to the causes… so we can eliminate the shortages?

9. Consequences of Lack of Transparency • Allows lack of action and perpetuates drug shortages; • Patients only learn when they cannot get drugs needed; • Not informing patients has consequences (unwilling to accept substitutions, no contingency plans); • Patients, once the victim of a shortage, live in constant fear; • Patients are kept out of problem-solving and finding solutions

10. Climate of suspicion and distrust With a lack of “good information” and lack of transparency theories and rumours grow: Has “bulk purchasing” and competitive pricing led to over-reliance on limited number of “low-cost” suppliers? Is the health system substituting “lower quality” foreign products for domestic supplies? Are internet pharmacies usurping drugs that should be available to residents? Is “lack of supply” deliberate on part of manufacturers to switch patients to more costly products? Are generic prices too low and therefore there is no incentive to supply?

11. Importance of FIP Forum in Canada • Drug shortages have been a chronic problem for a number of years and acute in the last 2-3 years • No sense that the problem has been resolved or even understood as to its causes, so patients remain at risk • Canada, like many public health systems, is less than transparent and loathe to deal with safety issues until there is serious harm and a public spotlight • A conference like this should be open to all patients and public

12. Drug Shortages Impact Individuals People need access to a consistent supply of medication.

13. Promoting patient-centred healthcare around the world Patient-Centred Care Requires Patient Engagement at All Levels DurhaneWong-Rieger, PhDChair, International Alliance of Patients’ Organizations