The new role of patient advocacy groups in drug development

Patient advocacy groups can be catalysts in Rx R&D (900 words, 4.5 minutes)

Nov 07, 2023

According to the Journal of the American Society for Experimental NeuroTherapeutics, patient advocacy groups, whose members tend to be patients and their families, are emerging as crucial participants in the Rx development process.

Therapeutic Advances in Rare Disease notes patient groups raise awareness about specific diseases or conditions, educating the public and policymakers. They may also influence policy, programs, and resource allocation. This can serve as a spur for increased research funding and support from both governmental and private entities.

The Orphanet Journal of Rare Diseases writes that these groups also facilitate patient recruitment for clinical trials, helping expedite the research process. Their outreach and connections within affected communities can improve the speed of trial enrollment. Research in the Journal of Managed Care + Specialty Pharmacy indicates that these organizations also advocate for patient needs in the regulatory approval process. Additionally, patient advocacy groups play a significant role in fundraising for research.

BMJ Open reports that patient advocacy groups in Canada have been actively involved in the drug development landscape. One example of a Canadian patient advocacy group is the Canadian Skin Patient Alliance (CSPA). The CSPA works to raise awareness about dermatology-related issues, provides education and resources to patients, and advocates for improved access to dermatological care and treatments. The group also collaborates with healthcare professionals, researchers, and pharmaceutical companies to improve the quality of life for dermatology patients across Canada.

Another example is the Canadian Psoriasis Network (CPN), a patient-led organization that focuses on advocating for people with psoriasis and psoriatic arthritis. Aside from providing information, support, and resources to patients, CPN also collaborates with dermatologists, researchers, and pharmaceutical companies to raise awareness about psoriasis, promote research, and advocate for better treatment options in Canada.

Additional sources:

THIS WEEK 11/07/23

The U.S. FDA granted approval of ustekinumab-auub (Wezlana, Amgen), an interchangeable biosimilar to ustekinumab (Stelara, Janssen) for treatment of adult patients with active psoriatic arthritis, moderately to severely active Crohn’s disease, moderately to severely active ulcerative colitis and moderate to severe plaque psoriasis who are candidates for phototherapy or systemic therapy.
The U.S. FDA approved Phathom Pharmaceuticals’ vonoprazan (Voquezna), a new novel potassium-competitive acid blocker, as a treatment for adults for the healing of all grades of Erosive Esophagitis, also known as Erosive GERD (gastroesophageal reflux disease), maintenance of healing of all grades of Erosive GERD, and relief of heartburn associated with Erosive GERD.
Lilly Canada announced tirzepatide (Mounjaro), a novel once-weekly GIP (glucose-dependent insulinotropic polypeptide) and GLP-1 (glucagon-like peptide-1) receptor agonist, is now available in Canada. Mounjaro is indicated as an adjunct to diet and exercise to improve glycemic control in adult patients with type 2 diabetes.
Endo International launched colchicine capsules, a generic version of Hikma’s Mitigare, for the treatment of gout and Behçet’s disease.

LISTEN UP

In season 11 of the NPC Podcast, Fanny Sie, Head of AI and Emerging Technology, External Collaboration, M&A Partnering of Roche Global Informatics, gives insights into going from clinician-researcher to business school, cross-company collaboration on data sharing during the pandemic, and using AI data points for better diagnoses. Hear her in conversation with podcast hosts Mitch Shannon, Jim Shea and Mark McElwain.

HEALTHBIZ REWIND

This feature of NPC Healthbiz Weekly looks back at some of the most insightful moments from previous NPC Podcast episodes. In Healthbiz Rewind, you’ll read bold life sci predictions made during the renowned “Prognostication Korner” segment of the NPC Podcast.

Josh Neiman
Chief Commercial Officer - North America & Europe
BeiGene
San Francisco
Season 04, episode 01
Listen to this episode here

What does the future hold for BeiGene’s presence in Canada? Where do you see the corporate investment in our country? (This episode was recorded in April of 2021)

It’s a long-term relationship. It’s a real investment. I think you can look at the way we’ve approached the market and the way that we resourced it as evidence of that commitment. But beyond that, we’ve been really thoughtful about trying to establish our Canadian presence with Canadians. I think a lot of other companies will look at Canada as an opportunity to provide a headquarters, but that’s not our approach. BeiGene’s approach is to go to local markets, and build affiliates based on local expertise because we intend to be there for the long run.

As we look at BeiGene’s presence in Canada today, we have one drug that’s been approved and a very robust pipeline with other molecules that are under development. We are constantly looking to in-license other molecules as well. I think, five to 10 years from now, people are going to see that BeiGene is a strong partner for Canadian patients in the fight against cancer, and it’s not going to be just one drug. It’ll hopefully be many, many more.

Just two weeks away: It’s the 17th Annual National Pharmaceutical Congress on Wednesday, November 22, 2023

The 17th Annual National Pharmaceutical Congress will be held on November 22, 2023, at the Mississauga Convention Centre. As Canada’s most significant stage for leaders in the pharmaceutical industry, the Congress presents industry reflections, ideas, and innovations. The Congress is attended by more than 200 delegates annually and is an opportunity to learn, reflect, and network with the industry’s most prominent thought leaders and visionaries. Register now for 50% off the regular price.

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