WHAT DOES THE NEW ONTARIO PHARMACARE PLAN OFFER CHILDREN AND YOUNG ADULTS WITH RARE DISORDERS?
Main Article Content
Keywords
Drugs for rare disorders; children; pharmacare; Ontario
Abstract
A publicly-funded pharmacare program (OHIP+) was announced in the 2017 Ontario budget for all children and young adults that will begin in January 2018 and cover drugs in the Ontario Public Drug Programs formulary. In this commentary, drugs indicated for rare disorders commonly occurring in childhood that were reviewed by the Common Drug Review (CDR) between 2004 and 2016 are examined to assess the Ontario reimbursement situation. Although 72% of the drugs are reimbursable, the eligibility criteria are unavailable for >50% of them. The criteria for others are onerous. Providing reimbursement for rare disorder drugs that received a positive CDR recommendation not already covered would likely cost <25% of OHIP+’s projected cost. Children who will benefit most from OHIP+ are those with common conditions whose parents do not presently have access to provincial or private insurance. Children with rare disorders deserve accessible provincial financial support for potentially life-transforming drugs.
References
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2. Government of Ontario. Exceptional Access Program: EAP reimbursement criteria for frequently requested drugs. Toronto: Government of Ontario; 2017. Available at http://health.gov.on.ca/en/pro/programs/drugs/pdf/frequently_re-quested_drugs.pdf.
3. Government of Ontario. Inherited Metabolic Diseases (IMD) Program. Toronto: Government of Ontario; 2016. Available at: http://www.health.gov.on.ca/en/pro/programs/drugs/funded_drug/pdf/list_food.pdf.
4. Government of Ontario. Inherited Metabolic Diseases Program. Toronto: Queen's Printer for Ontario; 2016. Available at: http://www.health.gov.on.ca/en/pro/programs/drugs/funded_drug/fund_inherited_drug.aspx.
5. Chai G, Governale L, McMahon AW, Trinidad JP, Staffa J, Murphy D. Trends of outpatient prescription drug utilization in US children, 2002-2010. Pediatrics 2012;130:23–31.
6. Chubb C. Free prescription drug coverage coming for Ontario youth and children. Toronto: CityNews, April 26, 2017. Available at: http://www.citynews.ca/2017/04/26/free-prescription-drug-coverage-coming-ontario-youth-children.
7. Leong V. OHIP+: Children and youth pharmacare program. Toronto: Canadian Organization for Rare Disorders; 2017. Available at: https://www.slideshare.net/raredisorders/roadmap-to-optimal-drug-access-vivian-leong-mohltc-june-14-2017.
8. Government of Ontario. Expenditure estimates for the ministry of Health and Long-Term Care (2017-2018) Toronto: Queen's Printer for Ontario; 2017. Available at:https://www.ontario.ca/page/expenditure-estimates-ministry-health-and-long-term-care-2017-18.
9. Janoudi G, Amegatse W, McIntosh B, Sehgal C, Richter T. Health technology assessment of drugs for rare disease: insights, trends, and reasons for negative recommendations from the CADTH Common Drug Review. Orphanet J Rare Dis 2016;11:164.
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11. Parkinson-Lawrence EJ, Shandala T, Prodoehl M, PlewR, Borlace GN, Brooks DA. Lysosomal storage disease: revealing lysosomal function and physiology. Physiology (Bethesda) 2010;25:102–15.
12. Elborn JS. Cystic fibrosis. Lancet 2016;388:2519–31.
13. Jó?wiak S, Mandera M, M?ynarski W. Natural history and current treatment options for subependymal giant cell astrocytoma in tuberous sclerosis complex. Semin Pediatr Neurol 2015;22:274–81.
14. Shmuely S, Sisodiya SM, Gunning WB, Sander JW, Thijs RD. Mortality in Dravet syndrome: a review.Epilepsy Behav 2016;64(Pt A):69–74.
15. Gentile JK, Ten Hoedt AE, Bosch AM. Psychosocial aspects of PKU: hidden disabilities – a review. MolGenet Metab 2010;99(Suppl1): S64–7.
16. Koné-Paut I, Galeotti C. Current treatment recommendations and considerations for cryopyrin-associated periodic syndrome. Expert Rev Clin Immunol 2015;11:1083–92.
17. Noris M, Remuzzi G. Atypical hemolytic-uremic syndrome. N Engl J Med 2009;361:1676–87.
18. Ito MK, Watts GF. Challenges in the diagnosis and treatment of homozygous familial hypercholesterolemia.Drugs 2015;75:1715–24.
19. Adams J. No patient access to only drug for PKU: have government drug plans been ignoring CDR? CADTHSymposium; 2015. Available at: http://stream1.newswire.ca/media/2015/05/27/20150527_C8242_PDF_EN_17046.pdf.
20. Pearse RM, Moreno RP, Bauer P, et al. Mortality after surgery in Europe: a 7 day cohort study. Lancet2012;380:1059–65.
21. Rawson NSB. Drug Safety: Problems, Pitfalls and solutions in Identifying and Evaluating Risk. Victoria,BC: FriesenPress; 2016.
22. Government of Ontario. Exceptional Access Program: Elaprase (idursulfase) – reimbursement guidelines Toronto: Government of Ontario; 2011. http://www.health.gov.on.ca/en/pro/programs/drugs/pdf/elaprase_reimburse.pdf.
23. CEDAC. CEDAC final recommendation: velaglucerasealfa. Ottawa: CADTH; 2011. Available at: https://www.cadth.ca/sites/default/files/cdr/complete/cdr_com-plete_Vpriv_April-29-11.pdf.
24. CEDAC final recommendation: alglucosidase alfa.Ottawa: CADTH; 2007. Available at: https://www.cadth.ca/sites/default/files/cdr/complete/cdr_complete_My-ozyme_June-14-2007_e.pdf.
25. CDEC final recommendation: sapropterin – resubmission. Ottawa: CADTH; 2016. Available at: https://www.cadth.ca/sites/default/files/cdr/complete/SR0472_com-plete_Kuvan-Oct-28-16.pdf.
26. CDEC final recommendation: everolimus. Ottawa: CADTH; 2015. Available at: https://www.cadth.ca/ sites/default/files/cdr/complete/cdr_compelte_SR0376_Afini-tor_Apr-17-15.pdf.
27. CDEC final recommendation: eculizumab. Ottawa: CADTH; 2013. https://www.cadth.ca/sites/default/files/cdr/complete/cdr_complete_Soliris-aHUS_July-23-13.pdf.
28. New Brunswick Health Council. Sask. to cover $460k annual cost of Vimizim for three siblings with Morquiosyndrome. Moncton: NB Health Council; 2015.Available at: https://www.nbhc.ca/sask-cover-460k-annual-cost-vimizim-three-siblings-morquio-syndrome#.WYx-qTGWyM_.
29. Rawson NSB. Pharma funding for patient advocacy: unethical or a necessity? Canadian Health Policy. Toronto: Canadian Health Policy Institute; 2015. Available at: http://www.canadianhealthpolicy.com/products/opinion--pharma-funding-for-patient-advocacy--unethical-or-a-necessity.html.