As we’re in the latter half of February, we’re looking forward to Governor Murphy’s Budget Address on February 27. Following that, the Legislature will begin deliberating and developing their response to the Governor’s Budget.

Additionally, New Jersey’s Rare Disease Day will be held on February 29. More details on the event are shared below.

On February 8, Governor Murphy provided welcoming remarks to a sellout crowd at BioNJ’s Annual Dinner Meeting, which highlighted innovators and innovations, as well as Patients and Patient advocates, based in New Jersey. Governor Murphy noted that the administration is “moving full speed ahead” in supporting the growth of New Jersey’s innovation ecosystem, including working to attract leaders in both the public and private sectors to support the next generation of innovators.

The Governor underlined BioNJ’s Health Equity in Clinical Trials Initiative as an example of the ecosystem coming together to achieve our shared goal of ensuring every Patient has access to the medicine and care that they need when they need it. He also noted his AI Moonshot, first announced in his State of the State Address earlier this year, as a resource and catalyst to inspire innovators, industry leaders and institutions of higher learning to shape the future of AI in a responsible way.

BioNJ thanks the Governor for joining our community and we look forward to building on our productive work with the Governor to ensure that the life sciences ecosystem in New Jersey remains home to a critical cluster of biomedical innovation. We will continue to advocate for policies that ensure this vision comes to fruition.

This year’s Rare Disease Day will be held at the Hilton Garden Inn in Hamilton on February 29 from 3:00PM - 6:00PM. The program will include panel discussions featuring leaders from all aspects of the rare disease community. Physicians, policymakers, Patients, caregivers, healthcare administrators and Patient advocates are all invited to attend.

For more information on the program, click here.

To learn more about NJ Rare Disease Day, please contact Ian McLaughlin, VP of Government Affairs, at IMcLaughlin@BioNJ.org.

Meanwhile, New Jersey Assembly Speaker Craig Coughlin joined Patient advocates and members of the life sciences ecosystem to recognize Cervical Cancer Awareness Month. BioNJ is grateful for the recognition of this and other priorities by policymakers and we look forward to continuing to make progress towards ensuring Patients have access to the medicines they need when they need them.

Bill Sherman, American Cancer Society Cancer Action Network (ACSCAN); Shawn Keogan, Director Patient Advocacy, Genmab; Quinton Law, American Cancer Society Cancer Action Network (ACSCAN); Mary Kay Roberts, Representing PhRMA (Riker Danzig); Wendy Lazarus, WML Public Affairs; Speaker Coughlin; Danielle Merzatta, Cervivor community member; Chris Merzatta; Laurie Clark, NJ Section of ACOG, (American College of Obstetricians and Gynecologists); Ian McLaughlin, Vice President, Government Affairs, BioNJ

Last Tuesday, February 13, the World Trade Organization (WTO) announced that two reports had been completed in preparation for the 13th Ministerial Conference in Abu Dhabi later this month. The first report summarizes the discussions since 2022, while the second notes that the Council for TRIPS will “continue its work as directed...to review and build on all the lessons learned and challenges experienced during the COVID-19 pandemic, and to build effective solutions in case of future pandemics, in an expeditious manner.”

Notably, it was reported that “consensus could not be reached on the extension of the Decision” regarding the possible extension to cover COVID-19 diagnostics and therapeutics.

The Creating Hope Reauthorization Act of 2024, which would reauthorize the Pediatric Rare Disease Priority Voucher Program (PRV), was introduced in the U.S. House of Representatives. Assessments of the efficacy of this program have shown that the program has enabled drugs developed for rare pediatric diseases to progress more quickly through all phases of clinical testing and were more likely to be first-in-class.

Only an estimated 5% of rare pediatric diseases have an effective treatment, and about 10 million children in the U.S. alone confront these conditions. Given that this program will expire on September 30, BioNJ is hopeful that New Jersey’s congressional delegation will consider supporting this legislation.

BioNJ released the following statement in support of the program:

Earlier this month, a large and bipartisan coalition of former officials at agencies, including leaders of the Department of Commerce, U.S. Patent and Trademark Office (USPTO) and the National Institute of Standards and Technology (NIST), sent a letter to President Biden to convey their concerns regarding proposals to misuse march-in authorities under the Bayh-Dole Act. After highlighting the success of the legislation, the letter notes how far-reaching this policy decision would be, how unrestricted it is, and how it would fundamentally undermine the purposes of programs like the Tech Hubs program.

To read the letter, click here.

The Subcommittee received testimony from advocates associated with the Alzheimer’s Association, American Heart Association, the Global Down Syndrome Foundation and others.

To watch the hearing, click here.

On February 15, the Subcommittee heard testimony from Dr. Daniel Jernigan from the Centers for Disease Control and Prevention (CDC), Dr. Peter Marks from the Food and Drug Administration (FDA) and CDR George Reed Grimes from the Health Resources and Services Administration (HRSA).

To watch the hearing, click here.

BioNJ is the voice of New Jersey’s life sciences sector in Trenton and Washington. BioNJ’s Public Policy Support Series sponsorship opportunities are now available for 2024. Help ensure BioNJ continues to deliver our message of improved Patient access and enhanced innovation through a Public Policy Support Series Sponsorship.  

Click here for more information.

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