CHALLENGE

• An emerging Life Sciences company had a treatment for rare metabolic disease
• Some patient upon diagnosis were denied access through Medicaid
• Patient engagement services and HUB vendors were not equipped to negotiate government processes
• Product moved from managed care to fee-for-service with no instructions for physicians and patients to access medication
• The physicians were global thought leaders and time was a challenge for their involvement.
• However, patients suffered setbacks without access to therapy
• Patient families reluctant to approach local state representative and the Medicaid program

APPROACH

• Members of the Acuity team were brought into the company as a part of a broader diagnostic of patient engagement.
• Created a focused State response team integrated with State Government Affairs, Patient Advocacy, Market Access, and Patient Engagement Services.
• Provided program decision makers with educational information on disease through state based stakeholders such as physicians, local trade organizations and contract lobbyists.
• Continued to keep in contact with State personnel throughout process.

RESULTS

• State created clear process for requesting coverage, review of applications, and contacts of key personnel involved moving forward.
• When process finalized, trained HUB on new state processes to ensure ocmpliance and patient access to appropriate care.
• Internal process expanded to other rare disease therapy to support patient access efforts.

Making changes to Medicare Part D that protect those with rare diseases By Michael Eging – – Thursday, October 31, 2019 https://www.washingtontimes.com/news/2019/oct/31/a-sledgehammer-on-a-fragile-market-when-a-scalpel-/ ANALYSIS/OPINION: When is the last time anyone heard of a government program not only working well, but also coming in under budget? Yet that is the reality of Medicare Part D, a market-driven program that provides…

By Jeff Oldham & Michael Hamrick December 04, 2018 Source: RealClear Health No one disputes that opioid addiction is a problem in need of varied solutions, as each person struggling is a story all his or her own. The opioid abuse epidemic has been a runaway freight train, barreling out of control through communities and lives, without much…

CHALLENGE

• Biogen seeking to shift from solely an MS-identified leader in biotech to a trusted leader in hemophilia
• The hemophilia community is entrenched with longstanding big-pharma corporate partners
• Hemophilia patients have been burned before and building trust within their community is difficult and takes time
• Biogen needed to establish trusted relationships with patients, patient organizations and KOLs in short order as they were expecting approval of two novel therapies within the year

APPROACH

• Aligned with patient community to listen to/uncover unmet needs
• Proposed a multi-stakeholder collaboration that offered free genotyping at all hemophilia treatment centers (HTCs) throughout US
• Biogen partnered with the National Hemophilia Foundation, American Thrombosis and Hemostasis Center and Bloodworks NorthWest to offer funding and scientific leadership for My Life, Our Future (MLOF) genotyping initiative.
• Each partner worked together to raise awareness of MLOF and socialize the offering to the community via social media and educational symposiums throughout the US.

RESULTS

• Biogen rapidly gained positive exposure to the hemophilia community demonstrating corporate leadership in a disease state that is difficult to break into.
• Biogen built trust in a skeptical patient community by identifying itself as a partner providing a solution to an unmet medical need
• MLOF provided an opportunity to establish a data set that researchers could tap into further R&D for better treatments for bleeding disorders.
• Beyond building trust and demonstrating leadership, this advocacy initiative resulted in intimate and trustworthy relationships with HCP KOLs and patient leaders within hemophilia – an asset during the commercial launch of the 2 approved products for patients with hemophilia.

CHALLENGE

• An emerging Life Sciences company developing a treatment hoped to address an ultra rare, metabolic, genetic disorder
• This patient community was fragmented without a patient advocacy organization
• This patient community was fragmented without a patient advocacy organization
• Company didn’t have anywhere to query patients when seeking input for natural history study, clinical trial design, etc.