Take a look at our Patent Reform Primer!

Why should young adult patients care about patent reform? Why does it matter, and how can you learn more? Check out our Patent Reform Primer!

Many young adult patients with chronic and rare conditions require a lifetime of access to treatments and therapies, costing them thousands and thousands of dollars.

Unfortunately, the pharmaceutical industry abuses loopholes in the patent system to increase profits and, as a result, patients are often denied access to more affordable alternatives and are unable to afford the prescription medications they need to live.

To ensure affordable access to essential medication, these abuses of our current patent system must end. This primer is meant to educate young adult patients in our community by briefly introducing the different patent abuse practices employed by brand-name pharmaceutical companies.

If you have any questions or comments about our primer, please contact us at admin@generationpatient.org!

Updates From our Peer-Support Roundtable!

This blog post is part of a series about our PCORI Engagement Award - we will post updates on our discussions every few months, so you can follow along! 

Last year, we shared that GP received an Engagement Award from PCORI (Patient-Centered Outcomes Research Institute) to “engage in patient-centered outcomes research and comparative effectiveness research (PCOR/CER) to assess peer support as a crucial intervention for young adults with chronic conditions.” 

Want to learn more about what this means?? Interested in the work we’re doing? Read on! :) 

What are “patient-centered outcomes research” and “comparative effectiveness research”?

Simply put, patient-centered outcomes research (PCOR) addresses issues that patients have concerns about or are interested in rather than focusing just on the interests of researchers or medical providers. In PCOR, patients are included in every step of the research process—we’re not just the “test subjects” but also help design research questions, create studies, and discuss results! 

Comparative effectiveness research (CER) looks at multiple ways of addressing a problem and compares how effective each solution is. For example, comparative effectiveness research might be helpful if we want to know if treatment A or treatment B is better for treating a specific medical issue. Or, we might want to know if a specific action (ex: watering your plants every week) leads to better outcomes (healthier plants) when compared to another action (watering every 2 weeks). 

What is an “intervention”?

In clinical research, the specific action or treatment that you’re studying (often to see if it helps improve health/well-being in some way) is referred to as the intervention. So, in the above examples, our interventions were “taking treatment A” or “watering the plants once a week.”   

What is Peer Support?

There are a variety of different definitions of peer support - for our purposes, peer support refers to supportive connections between young adults living with similar chronic conditions/medical disabilities or navigating similar life challenges. Peer support can take many different shapes, such as:

• talking one-on-one with a friend who has the same diagnosis

• joining a virtual group to talk through different topics

• or even connecting with other folks in the chronic illness community from around the globe via social media! 

While there are many benefits to other forms of support (like therapy, hospital-based groups, etc.), we think peer support is special! There’s something inherently powerful about talking with others who understand what you’re going through and have been through similar things. At GP, one of the ways we define ‘peer support groups’ is based on who leads/creates these spaces - which is why all our groups are run by members of our community (young adults living with chronic conditions). 

So what does this mean? Putting the pieces together:

We’re interested in highlighting the importance of peer support *as an intervention* for young adults with chronic conditions. Essentially, we want to show that peer support is an important way to address some of the challenges that young adults with chronic conditions face! 

Don’t we already know peer support is helpful?? Why is this research important, and what are you going to do with this research? 

While there is existing research that shows that young adults with chronic conditions could benefit from increased mental, emotional, and social support in general (Nearchou et al., 2019), there is not much out there examining how peer support can be beneficial specifically! 

Even if we already know (from personal experience) how important peer support can be, it’s also important to have research that shows the impact of peer support as an intervention. Peer support programs are generally seen by the medical field as “extra” services: they are nice to offer patients if the resources exist, but are not seen as a critical aspect of treatment. But in our experience as young adult patients, peer support is a HUGE part of addressing our mental, emotional, and social well-being. If we can point to research that shows peer support is clinically beneficial (has measurable/observable benefits) for patients, this helps show why medical systems should invest resources and funding into these types of programs. 

Right now, we’re working on showing WHY there’s a need for this research, laying out the current challenges in doing this research, and looking at opportunities to further develop this research.

Interested in following along with our roundtable discussions? Stay tuned for more updates on some of the research we’ve reviewed so far and some of our key takeaways from these meetings! 

Two Health Policy Scholar Alumni Meet with Chief Competition Officer Stacy Sanders

In mid-March, two of our Health Policy Scholar alumni, Grace Shults and Tai Chou-Kudu, had the opportunity to meet Ms. Stacy Sanders, the first Chief Competition Officer at the Health and Human Services. At Generation Patient, we believe competition in healthcare—whether within the pharmaceutical, insurance, hospital, or pharmaceutical benefit manager industries—is crucial to promoting patient options and lowering prices. We also believe that lived experience and patient voices must lead conversations about healthcare transformation in the United States. Please read this reflection from Tai below! 

“In 2023, I participated in the Health Policy Scholars program, a year-long initiative for young adults living with chronic health conditions facilitated by Generation Patient. I was born with Hemophilia, a rare condition that prevents my blood from clotting properly, necessitating me to rely on one of the most expensive drugs on the U.S. market for treatment. Following the program's conclusion, Generation Patient has continued encouraging me to stay involved with the Generation Patient community. They have connected me with this opportunity to engage with Stacy Sanders, the newly appointed Chief Competition Officer at the Department of Health and Human Services (HHS), whose role includes a focus on drug pricing policies that directly impact those with Hemophilia in the U.S., where the cost of pharmaceuticals, insurance, and medical care can be prohibitively expensive. This opportunity allowed me to articulate my experience and concerns regarding drug pricing and gain insights from my peers with different conditions.

It’s my hope that more policymakers at the macro level will be able to hear our stories firsthand and begin to see us as individuals rather than statistics or case studies. It would be great if those who directly work on the policies that impact my daily life could be deeply affected by our patients' stories as well.” 

To learn more about our health policy work, please visit https://generationpatient.org/health-policy-lab!

Attend a Peer Support Meeting

If you’ve never attended a Generation Patient peer support meeting, we’d love to have you join us! All our meetings are run by/for young adult patients with chronic conditions/disabilities, and are a great way to chat with peers who understand what you’re going through. These are generally an hour long and the monthly schedule can be found here. We currently offer six peer support meetings per month. 

Some of our meetings focus on specific topics, while others are just opportunities for “casual chats” with other members of our community. We also host activity-based groups (usually once a month), like poetry workshops, draw & talk sessions, game nights, and more! Even when we’re playing games (and not explicitly discussing the challenges of chronic illness), we believe that peer groups are still a really powerful source of support and community care. 🙂

Some of the topics we discussed last year:

• Coping with unpredictability

• Navigating outside perceptions of chronic illness

• Communication strategies and connecting with peers

• Self-Advocacy in the classroom and beyond

• Dealing with FOMO

• Navigating exam season

• Easy self-care

• Self-compassionate goal setting

If it’s your first time joining us (or if you just want a refresher!), please take a look at our Group Guidelines - this helps us ensure our meetings are as accessible as possible for our community members. 

Have any questions about our peer support meetings, or just want to learn more? Email rosa@generationpatient.org! 

Generation Patient on Prescription Drug Advertising Letter to Food and Drug Administration

Generation Patient applauds Senator Durbin (D-IL) and Senator Braun (R-IN) for their joint letter to FDA Commissioner Dr. Robert Califf to inquire about the oversight of pharmaceutical advertisements on social media. 

In January 2024, Generation Patient executive director Sneha Dave and director of operations Sydney Reed, with Dartmouth professor Dr. Steven Woloshin, published an opinion piece in STAT News. Soon after, Senator Durbin's office released this letter requesting several questions and highlighting concerns, some of which were based on areas of concern we have identified, including addressing the potential influence of comment sections when influencers advertise prescription drugs. 

Generation Patient has been pushing for the Food and Drug Administration to update its 2014 guidance and host a public workshop last held in 2009. In addition, Generation Patient has advocated increasing coordination between the Federal Trade Commission and the Food and Drug Administration to ensure oversight of these advertisements. 

Sneha Dave has also lectured at the University of Pennsylvania on increasing oversight of these advertisements on social media and spoke at a recent Duke-Margolis Center for Health Policy meeting.  

…

Generation Patient is a nonprofit advocating for young adults with chronic and rare conditions. The young adult patient-led organization leads peer support, health policy, and research programming. Generation Patient does not take any funds from the private healthcare industry. 

Introducing our 2024 Health Policy Scholars!

At Generation Patient, we aim to strengthen the advocacy skills of our fellow young adult patients while also ensuring that our perspectives are represented within health policy. We do this through our three key policy areas and the Health Policy Scholars program.

Our Health Policy Scholars Program combines peer support with educational and advocacy opportunities for young adults living with chronic and rare medical conditions. Our scholars bring a vital viewpoint to the health policy arena, united by their lived experiences and a keen interest in actively engaging with health policy matters, particularly those related to lowering healthcare costs and the prices of prescription medicines.

In 2023, we launched our first class of Health Policy Scholars. We're excited to announce the following young adult patients who will comprise our second cohort of scholars for 2024:

• Giovanna Burno

• Casey Doherty

• Adam Koch

• Peyton Miles

• Rachel Litchman

• Genna Goist

You can learn more about our scholars here!

Letter to the Senate Judiciary Committee

To Members of the Senate Judiciary Committee:

As young adults living with chronic medical conditions, we write today to inform you why we oppose S. 2140 - the Patent Eligibility Restoration Act, which your committee will hear on Tuesday, January 23. We are a patient advocacy group that has refused all funding from the private healthcare industry, ensuring our voices represent our experiences as young adult patients. Central to our belief, the patent system should incentivize innovation and competition and allow patients timely access to biosimilars and generics.

We oppose the Patent Eligibility Restoration Act, which allows predatory companies to exploit patent eligibility and harm efforts to treat health conditions. More specifically, the legislation would: 

• Eliminate all judicial exceptions to patent eligibility. 

• Enable any invention or discovery that can be claimed as a “useful process, machine, manufacture or composition of matter, or any useful improvement thereof,” is eligible for patent protection, except under specific provisions. 

• Asserts that patent eligibility should no longer be determined with consideration of Sections 102, 203, or 112 of Title 35.

In summary, if PERA gains momentum and passes, pharmaceutical companies will be allowed to get patents they cannot get today. We will see more monopolization of treatments, blocking crucial competition. The legislation would enable companies to charge higher prices for medical tests and treatments. It would impede innovation that we rely on as young adults living with lifelong conditions. 

We need innovation and affordability. In addition to the physical, emotional, and social tolls of such severe, complex conditions, too often, the lifesaving medications we need to survive are unaffordable. We look forward to sharing our perspectives further and to your continued prioritization of the current and next generation of Americans. 

Sincerely, 

The Generation Patient Team

Our Prescription Drug Affordability Board (PDAB) Primer

Check it out! We created the Prescription Drug Affordability Board (PDAB) Primer for patients and patient groups to advocate effectively for lower drug prices at the state level.

There is a lot of misinformation about PDABs, and we feel it is essential to address how critical they will be to help our community of young adult patients afford therapeutics! Do you have any other questions? Feel free to email us at admin@generationpatient.org; we will do our best to address them! 

Patent Letter to Congress

We write today as young adults living with chronic medical conditions to urge Congress to act on the need for meaningful pharmaceutical patent reform. While the Inflation Reduction Act marked a historic milestone, it predominantly benefits older patients, and it remains necessary to make significant reforms to the patent system that would make prescription drugs more affordable and accessible to patients across all age groups and demographics. We are committed to ensuring that the voices of young adult patients are included in this critical effort to reform the patent system.

Our young adult patient population is unique. We live with Crohn’s disease, lupus, arthritis, Ehlers-Danlos syndromes, frequent strokes, and numerous other health conditions. Many of these conditions are chronic, meaning we will likely live with them. The financial impact of these conditions can significantly impact the trajectory of our lives and futures. In addition, as young adults, we are experiencing times of transition, often marked by significant financial instability. We are pursuing education, developing independence, exploring our identities, and navigating complex health conditions, all while the devastating potential loss of health insurance looms over us. In addition to the physical, emotional, and social tolls of such severe, complex conditions, too often, the lifesaving medications we need to survive are unaffordable.

While reform to the patent system must ultimately include many reforms, we call on Congress to address the pharmaceutical industry’s abusive patent-thicketing tactics in January. Drug companies create patent thickets when they strategically apply for and accumulate dozens of approved patents on a single drug. This tactic essentially creates a “thicket” of patents around a product and makes it so that no generic company can challenge them all, thus delaying and preventing the entry of a lower-cost generic competitor drug from entering the market. 

Consider Amgen’s Enbrel, which treats rheumatoid arthritis, psoriatic arthritis, plaque psoriasis, ankylosing spondylitis, and moderate-to-severe juvenile idiopathic arthritis. According to the Initiative for Medicines, Access and Knowledge (I-MAK), Amgen filed 57 patent applications on Enbrel, which could block generic competition for the drug for 39 years. Victoria, a young adult patient, takes Enbrel to treat her chronic condition. The medication carries a list price exceeding $1,000 per month. Between her family’s insurance plan, for which she is still eligible, and a manufacturer-provided co-pay card, Victoria is able to afford the medication. Nevertheless, as a medical student without a steady source of income and student loans, Victoria worries constantly that the manufacturer support could end at any time about the options that will be available to her when she turns 26 and is no longer able to stay on her family’s insurance, and whether she will be able to afford Enbrel in the future.

Legislation to curb the anticompetitive practice of patent thicketing should include limits on the number of patents that a reference biological product manufacturer can assert in a patent infringement lawsuit against a company that seeks to sell a biosimilar version. These limits would speed the arrival of biosimilars to the market. Furthermore, legislation should incentivize and coordinate collaboration between the U.S. Patent and Trademark Office (USPTO) and the Food and Drug Administration (FDA) to close loopholes that brand manufacturers exploit. Finally, patent legislation should also address product hopping, which is the practice of a manufacturer switching to a follow-on product with a patent that expires later than when the patents on a reference product expire. Prohibiting this practice and including an enforcement mechanism in the legislation would speed the arrival of lower-cost generics to market and bring relief to patients. 

When discussing the pharmaceutical patent system and the desperately needed reforms, it is essential to acknowledge that many patient groups remain relatively quiet on the issue. This reticence stems partly from the complexity surrounding the substantial funding that several major patient groups receive from the pharmaceutical industry, which has often hindered their active engagement. These conflicts of interest display Big Pharma's power to influence the issues many non-profit organizations choose to advocate for or against - or to stay “neutral.”As a community of young adult patients living with chronic medical disabilities, Generation Patient is one of the few patient groups free of pharmaceutical or other industry funding and influence. 

We hope that you will prioritize meaningful patent reform for patients, not the interests of companies that have for too long from the conditions we will endure for a lifetime. We look forward to working together in the year's final weeks to ensure young adult patients' voices are represented in all policy decisions.

Patent Letter to Congress

We write today as young adults living with chronic medical conditions to urge Congress to act on the need for meaningful pharmaceutical patent reform. While the Inflation Reduction Act marked a historic milestone, it predominantly benefits older patients, and it remains necessary to make significant reforms to the patent system that would make prescription drugs more affordable and accessible to patients across all age groups and demographics. We are committed to ensuring that the voices of young adult patients are included in this critical effort to reform the patent system.

Our young adult patient population is unique. We live with Crohn’s disease, lupus, arthritis, Ehlers-Danlos syndromes, frequent strokes, and numerous other health conditions. Many of these conditions are chronic, meaning we will likely live with them. The financial impact of these conditions can significantly impact the trajectory of our lives and futures. In addition, as young adults, we are experiencing times of transition, often marked by significant financial instability. We are pursuing education, developing independence, exploring our identities, and navigating complex health conditions, all while the devastating potential loss of health insurance looms over us. In addition to the physical, emotional, and social tolls of such severe, complex conditions, too often, the lifesaving medications we need to survive are unaffordable.

While reform to the patent system must ultimately include many reforms, we call on Congress to address the pharmaceutical industry’s abusive patent-thicketing tactics in January. Drug companies create patent thickets when they strategically apply for and accumulate dozens of approved patents on a single drug. This tactic essentially creates a “thicket” of patents around a product and makes it so that no generic company can challenge them all, thus delaying and preventing the entry of a lower-cost generic competitor drug from entering the market. 

Consider Amgen’s Enbrel, which treats rheumatoid arthritis, psoriatic arthritis, plaque psoriasis, ankylosing spondylitis, and moderate-to-severe juvenile idiopathic arthritis. According to the Initiative for Medicines, Access and Knowledge (I-MAK), Amgen filed 57 patent applications on Enbrel, which could block generic competition for the drug for 39 years. Victoria, a young adult patient, takes Enbrel to treat her chronic condition. The medication carries a list price exceeding $1,000 per month. Between her family’s insurance plan, for which she is still eligible, and a manufacturer-provided co-pay card, Victoria is able to afford the medication. Nevertheless, as a medical student without a steady source of income and student loans, Victoria worries constantly that the manufacturer support could end at any time about the options that will be available to her when she turns 26 and is no longer able to stay on her family’s insurance, and whether she will be able to afford Enbrel in the future.

Legislation to curb the anticompetitive practice of patent thicketing should include limits on the number of patents that a reference biological product manufacturer can assert in a patent infringement lawsuit against a company that seeks to sell a biosimilar version. These limits would speed the arrival of biosimilars to the market. Furthermore, legislation should incentivize and coordinate collaboration between the U.S. Patent and Trademark Office (USPTO) and the Food and Drug Administration (FDA) to close loopholes that brand manufacturers exploit. Finally, patent legislation should also address product hopping, which is the practice of a manufacturer switching to a follow-on product with a patent that expires later than when the patents on a reference product expire. Prohibiting this practice and including an enforcement mechanism in the legislation would speed the arrival of lower-cost generics to market and bring relief to patients. 

When discussing the pharmaceutical patent system and the desperately needed reforms, it is essential to acknowledge that many patient groups remain relatively quiet on the issue. This reticence stems partly from the complexity surrounding the substantial funding that several major patient groups receive from the pharmaceutical industry, which has often hindered their active engagement. These conflicts of interest display Big Pharma's power to influence the issues many non-profit organizations choose to advocate for or against - or to stay “neutral.”As a community of young adult patients living with chronic medical disabilities, Generation Patient is one of the few patient groups free of pharmaceutical or other industry funding and influence. 

We hope that you will prioritize meaningful patent reform for patients, not the interests of companies that have for too long from the conditions we will endure for a lifetime. We look forward to working together in the year's final weeks to ensure young adult patients' voices are represented in all policy decisions.

Generation Patient Comment on the Work of the Colorado Prescription Drug Affordability Board (PDAB)

Thank you for the opportunity to comment on the work of the Colorado Prescription Drug Affordability Board (PDAB) as it begins to conduct affordability reviews. Generation Patient is a nonprofit organization created and led by young adults with chronic and rare conditions. We are proudly independent of all private healthcare industry funding, including from the pharmaceutical, insurance, and hospital industries. Our organization focuses on peer support, advocacy, and access to educational information and resources as fundamental pathways to empowerment.

According to the Georgetown University’s McCourt School of Public Policy, 53% of people ages 18-34 use prescription drugs. Moreover, 21% of people ages 18-49 years old say they have difficulty affording their medication. The share is likely to be even higher for younger adults given that the highest poverty rate in the United States is between the ages of 18-24, but given that research does not sufficiently focus on young adult populations, there is no specific data to cite. As young adult patients living with chronic medical conditions, we struggle to afford the prescription drugs that allow us to live and thrive. While our diagnoses and experiences differ, the high price of the prescription drugs that we rely on to survive and maintain our quality of life is a uniting factor for nearly everyone living with chronic health conditions in the United States - especially young adult patient, especially because we will depend on treatments not only for a few years but throughout our entire lives.

For example, one young adult patient takes Enbrel to treat her chronic condition. The medication carries a list price exceeding $1,000 per month. Between her family’s insurance plan for which she is still eligible and a manufacturer provided co-pay card, Victoria is able to afford the medication. Nevertheless, as a medical student who is in debt and without a steady source of income, Victoria worries constantly that the manufacturer support could end at any time and about the options that will be available to her when she turns 26 and is no longer able to stay on her family’s insurance. 

Young adult patients - like all patients - need innovative prescription drugs at fair prices. Innovation and affordability are not mutually exclusive. The work of the Colorado Prescription Drug Affordability Board is integral to holding pharmaceutical companies accountable and increasing the transparency of prescription drug prices. 

The Colorado PDAB is charged with reviewing affordability and, if applicable, setting upper payment limits on some of the highest-priced drugs, many of which treat chronic conditions, precisely because of the financial burden that accessing these drugs places on both the patients who depend on them and the health system as a whole. This holistic review of how these drugs are priced and accessed provides an important foundation for legitimizing what so many patients know — that many drugs are prohibitively expensive, creating an often insurmountable barrier to access for the patients who need them. Furthermore, the upper payment limit setting process is one of the few tools that states have to create accountability for manufacturers and to increase the ability of patients with the highest utilization rates to access some of the most high-priced drugs. 

The PDAB’s draft affordability report on Trikafta mentions that many patients rely on patient assistance programs (PAPs) in order to afford the expensive drug. While this assistance can make the drug more affordable for patients in the short-term, there are important draw-backs that should be considered when factoring PAPs into an affordability review of a drug. First, PAPs do not address the root cause of the expense of a drug - the ability of the manufacturer to set the price and by insulating the patient from the list price can perpetuate the ability of the manufacturer to continue to set exorbitant prices. Second, PAPs are not always a reliable source of financial support, and the manufacturer can cut off access to a patient at any time. We have heard stories where a patient has their assistance pulled the day they were to receive their Stelara injection.

As we continue closely following the work of the Colorado Prescription Drug Affordability Board, we hope that the reviews will continue to prioritize patients over private healthcare industry interests. We are grateful for the opportunity to submit this testimony, on behalf of our community of patients and the next generation of patients.

Generation Patient has signed on to an amicus brief in support of patients with narcolepsy

Generation Patient is pleased to announce our participation in an amicus brief advocating for patients living with narcolepsy, whose access to innovative treatments is at risk due to pharmaceutical monopolies. Our organization is dedicated to championing patients' rights and promoting equitable access to cutting-edge therapies.

The amicus brief supports the FDA's decision to approve Lumryz, a once-a-night medication for narcolepsy that offers clear clinical benefits, as a competitor to Jazz Pharmaceuticals' twice-nightly treatment. The FDA approved both drugs under the Orphan Drug Act, which encourages innovation for conditions affecting smaller patient populations by granting exclusivity for marketing and sales. Jazz Pharmaceuticals has taken legal action against the FDA, alleging that the agency's approval of Lumryz was "unlawful” and violates their exclusivity, but as an organization, we feel that such innovative progress should be celebrated. The amicus brief carefully outlines the unique advantages of Lumryz, particularly the substantial benefit of a single-dose medication for narcolepsy.

We hope to continue to see this sort of innovation that we firmly believe will have a meaningful effect on the lives of patients in the U.S. 

Our Letter to Congress for Patent Reform

As young adults with chronic conditions, we are pleading for Congress to recognize the urgent need for meaningful patent reform. While the Inflation Reduction Act marked a historic milestone, predominantly benefiting older patients, it is still necessary to establish robust patent reform that would vastly improve the lives of patients across all age groups and demographics. We are committed to ensuring that the voices of our fellow young adult patients are not overlooked in this crucial reform effort.

Our young adult patient population is unique. We are affected by Crohn’s disease, lupus, arthritis, Ehlers-Danlos syndromes, frequent strokes, and numerous other health conditions. Many of these conditions are chronic, meaning we will likely live with them throughout the majority of our lives, the financial impact of which could greatly influence the trajectory of our futures. Furthermore, as young adults, we are going through times of transition, often marked by immense financial instability to begin with. We are pursuing our education and our independence, developing our identities, and navigating complex health conditions, all while the devastating potential loss of insurance looms over us. The physical, emotional, social, and financial toll of such severe, complex conditions is clear, yet the lifesaving medicines we need are still unaffordable.

Patent reform should include pressure on pay-for-delay tactics (offering patent settlements to delay competition), patent thickets (companies having to navigate a forest of patents often protecting on meaningless enhancements), and product hopping (manufacturer switches to a follow-on product). We support the Congress’s efforts to pass legislation addressing these abusive practices. There is urgency and we expect patient-centered patent policies to pass through the Senate by the end of the year.

Congress has the key to set a precedent for urgent and meaningful patent reform, and we hope agencies will follow suit. As an organization, we have worked to submit comments and will continue to put public pressure on agencies, such as the National Institute of Health, Food and Drug Administration, United States Patent and Trademark Office, and Federal Trade Commission, to curb patent abuse.

Reforming the patent system is crucial for advancing therapeutic options. As young patients, we are cycling through treatment options quickly. For many conditions, the younger a person is diagnosed, the more severe the disease can be. And we will live with these conditions for a lifetime. It is often scary and frustrating for us to think about our future. However, patent reform has the enormous potential to promote novel inventions.

It's important to acknowledge that many patient groups have been relatively quiet on the issue of patent reform. This reticence is partly due to the complexities surrounding the substantial funding that several major patient groups receive from the pharmaceutical industry, which has, in some cases, hindered their active engagement in advocating for patent reform. These conflicts of interest show the power of Big Pharma in impacting the issues nonprofits choose to advocate.

We feel inspired and have great hope that you will prioritize meaningful patent reform for patients, not just companies that are profiting off the conditions we will endure for a lifetime. We look forward to working together this Congress to ensure young adult patient voices are represented within all policy decisions.

Publication Partnership with Health Care Transitions, a Peer-Reviewed Journal!

Through our program, the Crohn’s and Colitis Young Adults Network (CCYAN), we are proud to announce that the proceedings of our yearlong Roundtable on Young Adults with Inflammatory Bowel Disease (IBD) will be published in a special collection by the peer-reviewed journal Health Care Transitions. This collection will serve as a resource for both patients with IBD and their care teams, providing insight into the experience of having IBD as a young adult and guidelines for effective and patient-centered treatment. Research into patient-centered solutions is crucial for all young adults with chronic conditions. Our special collection with Health Care Transitions is an exciting first step toward further research into this area.

The Roundtable on Young Adults with IBD is a yearlong learning community comprised of monthly discussions between patients and providers to improve outcomes for the young adult IBD-patient population. In each roundtable session, young adult patients with lived experience engage with providers in collaborative discussions on issues most concerning to them. After each discussion, our team composes proceedings that highlight the major insights and points of discussion of each session. This focus on patient-centered research practice continues into the writing of the publications, with each produced by patients in concert with expert clinicians. 

Check out the proceedings we have published thus far below!

• Peer Support Interventions for Young Adults With Inflammatory Bowel Diseases

• Best Practices to Support Inflammatory Bowel Disease Patients in Higher Education and the Workplace: A Clinician’s Guide

• What Adult Gastroenterologists Should Know About Young Adults With IBD: Navigating Transition of Care for Young Adults With IBD

• Roundtable on Emerging Adults with IBD: A Multi-Stakeholder Perspective and Patient-Driven Analysis of the Current Transitional Challenges and Gaps in Research

Generation Patient Awarded a $250,000 PCORI Engagement Award for Project on Engaging Adolescents and Young Adults with Chronic Conditions in PCOR/CER for Peer Support Intervention

Generation Patient has been approved for a $250,000 funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support Generation Patient in building the capacity to engage in patient-centered outcomes research and comparative effectiveness research (PCOR/CER) to assess peer support as a crucial intervention for young adults with chronic conditions.

Sneha Dave, executive director, and Sydney Reed, director of operations, will lead the engagement project at Generation Patient. The project, led entirely by young adult patients, will: 

• Form a multi-stakeholder group of adolescent and young adult (AYA) patients, medical professionals, and researchers to engage in a two-year Roundtable on Peer Support for Young Adults with Chronic Conditions in which they will identify the need, current challenges, and opportunities to develop future peer support PCOR/CER

• Co-develop Proceedings document to outline findings of the Roundtable discussions

• Co-develop Peer Support Toolkit to further engage patient stakeholders by helping them to create their own peer support networks.

• Co-develop a strategic planning document for future peer support PCOR/CER that incorporates the priorities and needs of AYA patients and other stakeholders

“Our team has been working to transform our organization into a more holistic and expansive source of support for young adults with chronic and rare conditions,” Sydney Reed, director of operations at Generation Patient said. “A major part of this work has been not only to create more sources of peer support for our demographic but also to bring understanding to healthcare professionals about the importance of this support as a critical intervention in the care of young adult patients.” 

Over the last couple of years, Generation Patient has held over 450 peer support meetings for adolescent and young adult patients. This grant will enable us to bring together patients, providers, and researchers to develop concrete outcomes for furthering peer support as a valued intervention for AYA patients. 

Through the Engagement Awards, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered comparative clinical effectiveness research (CER). Generation Patient was one of several organizations awarded funding under a new Engagement Award funding opportunity focused on supporting small organizations, in particular those that may not have any prior experience with patient-centered CER, to build their capacity to participate in this research. PCORI will support recipients with technical assistance and learning network activities across their project period. 

“Small organizations offer unique perspectives and capabilities as partners in comparative clinical effectiveness research,” said Greg Martin, PCORI’s chief of engagement, dissemination, and implementation. “We look forward to supporting Generation Patient in their activities and their exploration of ways to contribute to future CER.”

Generation Patient’s project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund CER that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.