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Jazz Pharmaceuticals Launches Initiative to Help Educate People Living with Rare Form of Leukemia

September 17, 2020
Program aims to empower patients and their loved ones living with secondary acute myeloid leukemia or myelodysplastic syndromes through powerful tools and real stories

DUBLIN, Sept. 17, 2020 /PRNewswire/ -- Jazz Pharmaceuticals plc (Nasdaq: JAZZ) today announced the launch of Find the Right Fit (FindTheRightFit-sAML.com), a U.S. patient education program developed in consultation with the Myelodysplastic Syndromes (MDS) Foundation, Inc. and the Cancer Support Community focused on empowering people affected by secondary acute myeloid leukemia (sAML) and MDS.

Within the hematology oncology community, certain patient groups face especially difficult odds. In particular, patients newly diagnosed with sAML and related blood disorders have few resources focused on disease education and managing daily life that are dedicated to this community. As a subtype of AML, which has the lowest survival rate of all leukemias1, sAML has a particularly poor prognosis.2,3

"During Blood Cancer Awareness Month, we reflect on the unwavering strength of patients, caregivers, families and healthcare providers battling or impacted by blood cancer," said Kim Sablich, executive vice president and general manager of North America at Jazz Pharmaceuticals. "Find the Right Fit was created with the understanding that an sAML diagnosis can be overwhelming, but that education can help inform optimal treatment plans that work best for each individual patient."

Find the Right Fit—Nagivating sAML offers patients and their caregivers a powerful collection of tools, including articles, videos, and patient stories, intended to educate on the science behind sAML, provide information on which subtypes patients should be tested for, and offer resources regarding treatment options and coping strategies. The program also shares the stories of patients, which are featured to help those impacted by sAML relate to the various experiences and perspectives that exist within the community.

"In addition to the support available through the Cancer Support Community and the Myelodysplastic Syndrome Foundation, Inc., we are pleased that Find the Right Fit adds resources and information to help inform and inspire people during this critical point in time," said Linda Bohannon, MSM, BSN, RN, president of the Cancer Support Community.

Making up approximately 30 percent of AML cases, sAML can spread quickly and requires a specialized treatment approach, which is why it is important that patients know what to discuss with their doctors in order to pursue the route best suited for their unique needs.3-7 By listening to advocacy groups, patients and their care teams, Jazz hopes to continue evolving the Find the Right Fit program to better serve those living with an sAML or MDS diagnosis.

"With 16 years of experience at the MDS Foundation, I understand how overwhelming a cancer diagnosis can be for a family," said Tracey Iraca, executive director of the MDS Foundation, Inc. "The foundation is proud to partner with Jazz on the launch of Find the Right Fit – Navigating sAML, to help provide patients with vital information to navigate a rare disease diagnosis."

About AML
Acute myeloid leukemia (AML) is a type of cancer in which the bone marrow makes abnormal myeloblasts (a type of white blood cell), red blood cells, or platelets.3 It can sometimes spread to other parts of the body including the lymph nodes, liver, spleen, central nervous system (brain and spinal cord), and testicles.8 AML is a relatively rare disease representing 1.1 percent of all new cancer cases.9 It is estimated that more than 19,500 people will be diagnosed with AML in the United States this year with the potential for more than 11,000 people to die from the disease.10 The median age at diagnosis is 68 years old,9 with rising age associated with a progressively worsening prognosis.11 There is also a reduced tolerance for intensive chemotherapy as patients age.12 AML has the lowest survival rate of any other form of leukemia.9 Patients with newly diagnosed therapy-related AML or AML with myelodysplasia-related changes may have a particularly poor prognosis.13-15  A hematopoietic stem cell transplant may be a curative treatment option for patients.16

About Jazz Pharmaceuticals
Jazz Pharmaceuticals plc (Nasdaq: JAZZ) is a global biopharmaceutical company dedicated to developing and commercializing life-changing medicines that transform the lives of patients with serious diseases - often with limited or no options. We have a diverse portfolio of marketed medicines and novel product candidates, from early- to late-stage development, in key therapeutic areas. Our focus is in neuroscience, including sleep and movement disorders, and in oncology, including hematologic malignancies and solid tumors. We actively explore new options for patients including novel compounds, small molecule advancements, biologics and innovative delivery technologies. Jazz is headquartered in Dublin, Ireland and has employees around the globe, serving patients in more than 90 countries. For more information, please visit www.jazzpharmaceuticals.com and follow @JazzPharma on Twitter.

About the MDS Foundation
The MDS Foundation, Inc. is an international non-profit advocacy organization whose mission is to support and educate patients and healthcare providers with innovative research into the fields of MDS, Acute Myeloid Leukemia and related myeloid neoplasms in order to accelerate progress leading to the diagnosis, control and cure of these diseases.

About the Cancer Support Community
As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. This global network of 175 locations, including CSC and Gilda's Club centers, healthcare partnerships and satellite locations, delivers more than $50 million in free support services to patients and families.

Media Contact:
Jacqueline Kirby, Vice President, Corporate Affairs & Government Relations
Ireland +353 1 697 2141        
U.S. +1 215 867 4910

Investor Contact:
Kathee Littrell, Vice President, Investor Relations
Ireland +353 1 634 7887        
U.S. +1 650 496 2717

References:

  1. Leukemia & Lymphoma Society. Updated data on blood cancers. 2019-2020. https://llsorg.prod.acquia-sites.com/sites/default/files/file_assets/PS80%20Facts_Book_2019-20_FINAL.pdf. Accessed September 1, 2020.
  2. Granfeldt Østgård LS, Medeiros BC, Sengeløv H, et al. Epidemiology and clinical significance of secondary and therapy-related acute myeloid leukemia: a national population-based cohort study. J Clin Oncol. 2015;33(31):3641-3649.
  3. National Cancer Institute. Adult acute myeloid leukemia treatment (PDQ®) – patient version. https://www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq. Updated March 6, 2020. Accessed September 1, 2020.  
  4. Nagel G, Weber D, Fromm E, et al. German Austrian AML Study Group (AMLSG). Epidemiological, genetic, and clinical characterization by age of newly diagnosed acute myeloid leukemia based on an academic population-based registry study (AMLSG BiO). Ann Hematol. 2017;96(12):1993-2003.
  5. Leone G, Mele L, Pulsoni, A, et al. The incidence of secondary leukemias. Haematologica. 1999;84(10):937-945.
  6. Cheung E, Perissinotti AJ, Bixby DL, et al. The leukemia strikes back: a review of pathogenesis and treatment of secondary AML. Ann Hematol. 2019;98(3):541-559.
  7. DiNardo CD, Cortes JE. Mutations in AML: prognostic and therapeutic implications. Hematology Am Soc Hematol Educ Program. 2016;1:348–355.
  8. American Cancer Society. What is acute myeloid leukemia (AML)? https://www.cancer.org/cancer/acute-myeloid-leukemia/about/what-is-aml.html.  Updated August 21, 2018. Accessed September 1, 2020.
  9. SEER Stat Facts: AML. 2020.
  10. American Cancer Society. Key statistics for acute myeloid leukemia (AML). https://www.cancer.org/cancer/acute-myeloid-leukemia/about/key-statistics.html. Updated January 8, 2020. Accessed August 26, 2020.
  11. Baer MR, George SL, Larson RA et al. Leukemia. 2011 May;25(5):10.1038/eu.2011.9.
  12. Klepin HD. Hematology Am Soc Hematol Educ Program. 2014;2014(1):8-13.
  13. Goldstone AH, Burnett AK, Avivi I et al. Secondary acute myeloid leukemia has a worse outcome than de novo AML, even taking into account cytogenetics and age. AML 10, 11, 12 MRC Trials. Blood. 2002;100(88a):(Abstr 322).
  14. Schiller GJ. Hematol Educ Program. 2013:201-208.
  15. Kern W, Haferlach T, Schnittger S, Hiddemann W, Schoch C. Prognosis in therapy-related acute myeloid leukemia and impact of karyotype. J Clin Oncol. 2004 Jun 15;22(12):2510-1.
  16. Peccatori, J and Ciceri, F. Haematologica. 2010 Jun; 95(6):857–859. doi:0.3324/haematol.2010.023184.

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