Director, US Patient Advocacy & Government Affairs, SMA- Gene Therapy

Bannockburn, IL, US
Nov 17, 2020
Required Education
Associate Degree
Position Type
Full time

Ready to join a team committed to developing and commercializing gene therapies for patients and families devastated by rare neurological genetic diseases? AveXis is advancing cutting-edge science, starting with our proprietary gene therapy for the treatment of spinal muscular atrophy (SMA). We are in the midst of an incredible journey and are looking for passionate individuals to join us on this important mission.

AveXis, a Novartis company, is dedicated to developing and commercializing novel treatments for patients suffering from rare and life-threatening neurological genetic diseases. Our initial product is a proprietary gene therapy approved by the US Food and Drug Administration for the treatment of pediatric patients with SMA. In addition to developing a treatment for SMA, AveXis also plans to develop other novel treatments for rare neurological diseases, including Rett syndrome and a genetic form of amyotrophic lateral sclerosis caused by mutations in the superoxide dismutase 1 (SOD1) gene.

In order for patients to fully benefit from these transformative therapies, a series of critical issues must be addressed, ranging from accelerating diagnosis, to forging innovative payment models that expand access to gene therapy. In bringing the first systemic life-saving gene therapy to patients, AveXis is poised to play a leading role in partnering with governments, patient advocacy groups, think tanks, and other critical stakeholders globally to create an environment that allows more patients to benefit from more gene therapies.

The Director, US Patient Advocacy & Government Affairs, SMA will be responsible for holistic management of interaction with external partners. He/she will be able to identify and prioritize critical projects to drive joint objectives that address patient needs by partnering with patient advocacy groups, government leaders, and other stakeholders.

  • Responsible for holistic management of interaction with external partners, achieved through cross-functional collaboration.
  • Partner with patient advocacy groups, government leaders, and other stakeholders to implement specific initiatives that advance our strategic objectives in areas of "common cause." Specific focus areas include:
    • Advancing patient-focused drug development, including trial design, recruitment, regulatory preparations, and communication.
    • Advocating for policies that support the development of, and access to, gene therapies.
    • Ensuring patients access at the population and individual level.
    • Supporting the patient journey including shortening the time to diagnosis, treatment, and providing caregiver support to improve health outcomes.
  • Directly manage advocacy project, programs and events, including internal and external coordination, funding, and communication.
  • Connect patient advocacy groups to AveXis associates in medical affairs, translational medicine, market access, and other functions to partner on key initiatives.
  • Collaborate with other functions and with Novartis (our parent company) colleagues to ensure coordinated plans for patients and government stakeholders.

  • Bachelor's degree required, or graduate level degree preferred.
  • At least 8 years of pharmaceutical industry experience with direct responsibility for external collaboration with third parties as part of the government affairs, policy, advocacy department
  • Broad knowledge of the biopharma industry; must have a working knowledge of drug development, HEOR, access and reimbursement, and commercialization.
  • Strong project management skills with proven ability to independently drive projects forward, establish budget and timeline, keep track of tasks, professionally prepare for meetings, follow up in a timely fashion, demonstrate appropriate accountability.
  • Firm understanding of industry compliance requirements with the ability to make and manage funding decisions.
  • Ability to solve conflicts or challenges in a timely manner, demonstrating sound judgement with minimal supervision.
  • Ability to function with little administrative support, can-do attitude.
  • Strong strategic planning skills - able to identify and prioritize critical projects to drive AveXis' strategy and address patient needs.
  • Demonstrated ability to successfully drive and collaborate on cross-functional strategic initiatives.
  • Strong interpersonal skills; builds relationships by identifying common goals and engaging in a transparent, trust-building manner.
  • Collaborative - connects internal and external stakeholders, serving as a facilitator and integrator (not a gatekeeper).
  • Strong written and verbal communication skills; articulates ideas in a clear manner which appropriately engages external stakeholders; tells compelling stories.
  • Travel is estimated at 30%.

This position is based in AveXis' Bannockburn, IL location.

The level of this position will be based on the final candidate's qualifications.

Please note this job description is not designed to cover or contain a comprehensive listing of activities, duties or responsibilities that are required of the employee for this job. Duties, responsibilities and activities may change at any time with or without notice.

AveXis is committed to creating a diverse environment and is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity, national origin, genetics, disability, age, sexual orientation or veteran status.