Our comment on Transforming Discoveries into Products: Maximizing NIH’s Levers to Catalyze Technology Transfer

Generation Patient is the largest organization representing adolescents and young adults with chronic and rare conditions. We are led entirely by young adults with chronic conditions. We take no pharma funding. We work to increase the health literacy, confidence, self-management skills, and advocacy strategies of young adult patients.

Patient-centered patents 

NIH has a unique opportunity to support the issuance of only high quality patents by ensuring that its patents serve as valuable prior art. Your agency can set the stage for  comprehensive and thorough discussions of existing work in the field that can be cited to challenge other patents effectively. Instead of merely describing the patent claims, NIH should clearly elucidate the background and scope of the innovation you intend to safeguard for future advancements. In this same vein, NIH must create quality guidelines for NIH patents to set a standard that others should follow. This might include the number of claims, the broadness of claims, and the robustness of disclosures.

March-in rights 

When drug prices get out of control, we urge the NIH to use its march-in rights. The public dollars NIH expended for development of certain therapeutics should be returned for the public benefit, by making over-priced drugs more affordable through the use of march-in rights.  Additionally, today’s drug shortages are affecting our young-adult community; march-in rights provide a critical opportunity to allow for widespread manufacturing. 

Reasonable Pricing

The NIH should enforce reasonable-pricing claims. You must use your authority to ensure that publicly funded medical technology is priced fairly. Patients in the United States are struggling to afford medicines that have been at least partly available due to public investment. The American public deserves to benefit from reasonable pricing protections which will enable them to have access to such life-saving medicines. 

Conclusion

According to the CDC, over half of young adults in the United States have a chronic condition. This number is only growing. The NIH can help young, lifelong patients across the U.S. and internationally  afford therapeutics which help them improve their quality of life and allow them to thrive into adulthood and beyond. As a patient group, we do not believe innovation and affordability are mutually exclusive. The NIH has a responsibility to balance innovation with affordability and access.

Our comment to the United States Patent and Trademark Office: America Invents Act Trial Proceedings Before the Patent Trial and Appeal Board

Generation Patient was created—and is led entirely—by young adult patients. Through our nonpartisan work and focused initiatives—the Health Policy Lab and the Crohn’s and Colitis Young Adults Network —we increase the health literacy, confidence, self-management skills, public policy knowledge, and advocacy strategies of young adult patients. We have developed programming for navigating the higher education landscape and educating people about health policy with independent research and analysis. Additionally, we have facilitated more than four hundred virtual meetings and events during the past two years focused on connecting young adult patients worldwide and providing them with critical peer support. Our organization does not accept funding from the pharmaceutical, insurance, hospital, or related healthcare industries. 

The current proposed rules of USPTO about inter partes review and other post-grant review proceedings negatively affect us as young adult patients and the next generation of patients. These must be reconsidered due to the adverse consequences they would impose on patients and the greater public in seeking to contest invalid patents. By creating heightened barriers, these rules stifle competition and unjustifiably drive up prices, particularly for crucial medical treatments we rely on as patients. Moreover, inter partes review fosters innovation by ensuring that patents do not impede future research and development. When invalid patents are challenged, it paves the way for others to build upon existing knowledge and create new, innovative treatments. This promotes a more dynamic and competitive pharmaceutical industry, leading to the development of new medicines and improved healthcare options. 

When the patent system is misused, our demographic of young people with chronic conditions is disproportionately affected. We need novel innovation, fairly priced. As young people, we rely on affordable medicines and need prescription drug inventions with more than a marginal benefit. 

The USPTO should retract its proposal and, in its place, propose rules that actively foster the challenging of invalid patents, facilitating a more accessible process for the broader public to do so. This aligns not only with the original intentions of Congress but also addresses the pressing needs of the American people, who are counting on a fair and supportive patent system.

In conclusion, we want to emphasize that for us as young adult patients, access to affordable prescription medications is a basic human need. According to the Georgetown University McCourt School of Public Policy, 53% of people ages 18-34 use prescription drugs. Moreover, 21% of people ages 18-49 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.

We welcome elaborating on any of the above and continuing to partner to ensure the patent system works for patients.

Sincerely, 

Generation Patient 

www.generationpatient.org 

My Experience Becoming ‘Officially’ Chronically Ill as a Young Adult

By Cade Johnson

I was sick as a child. Frequently, notably sick. A few days after my birth, my mother returned to the hospital because I wasn’t nursing. Within a year, I was back again, then for severe and recurrent ear infections–fortunately, treated in time with a myringotomy tube surgery to avoid permanent hearing loss. My mother, an artist with an MFA in photography and a lifelong personal tendency towards archiving, took plenty of photos even when I was in the hospital.

One photograph, in particular, stands out in my memory: a child, small even in a pediatric bed, wearing a tiny blue surgical cap, surrounded by nurses. This was the first of my medical troubles, but unfortunately–in a foregone conclusion, perhaps–far from the last. My extremities today have pale scars at the wrists and ankles, ghostly reminders of several bouts of impetigo. The weeping sores were difficult to differentiate from the broad swatches of itching, ruby-red and blistering hives that would also cover my skin. During childhood, I experienced migraines that ruined birthday sleepovers, frequent UTIs, and episodic diarrhea that kept me doubled over and dreading public restrooms. In high school, I was plagued with fainting and fatigue. After a few emergency room visits, I was diagnosed with a mitral valve prolapse which made participation in athletics unlikely–not least because of persistent clumsiness that resulted in broken bones, twisted ligaments, and battered flesh from unlikely accidents. 

But it wasn’t until well into adulthood that I was diagnosed with the chronic illnesses that follow, the names and symptomatologies that I use as shorthand for providers and friends alike. Irritable Bowel Syndrome (IBS), fibromyalgia, hypermobile type Ehlers-Danlos Syndrome (EDS): they give shape to my experience without needing an exhaustive account of the whole saga. Did I instantly become chronically ill the moment those words appeared on my chart? Simple logic says no, but reconciling my identity and autobiography with this “new” designation was still a startling shift. I felt like the revelations raised more questions than they gave answers, an experience that, as a historian-by-training, was both exciting and daunting. Here was a much larger question to be answered via research, documentation, and observation, rather like the archetypal detective–my personal tendency in dealing with challenges in life is to intellectualize. 

Yet being a young person with a chronic illness can feel like being stuck in a never-ending detective novel. Still, it’s not nearly as exciting to live in a mystery as it is to read one–the twists and turns, red herrings, and double-meanings are less thrilling and more exhausting when it’s not your entertainment or your academic pursuit and instead is your life. No one wants to be the last page torn out of the journal or the cryptic message left on the answering machine. 

That said, I have come to realize that it doesn’t have to be like that. With peer support, community building, awareness raising, provider collaboration, and policy change, being a young adult with a chronic condition can be, if not exactly easy or straightforward, at least not an endless series of riddles. I’m proud to be a part of Generation Patient and our mission to empower young adults with chronic illnesses not just to survive but to thrive. 

Letter to the USPTO and FDA

Re: Docket No. PTO-P-2022-0037 

Director Vidal and Commissioner Califf: 

The undersigned organizations are submitting additional comments to add to the record, after several of us participated in the USPTO-FDA Listening session on January 19, 2023. One common theme among the patient, consumer, and disability advocates was the need to improve opportunities for those most impacted, patients and consumers, to be included within the USPTO and FDA collaboration. As patient, consumer, and disability organizations, we urge the USPTO and FDA to better include the American public in any discussions for patent examination and approval reforms. Together, we must ensure that the patent system works for patients and the public and that evidence drives all decisions at the USPTO and FDA. We see a great opportunity for the USPTO and FDA to lead in early patient engagement best practices. 

In the past, patients have been effectively excluded from key discussions on patent reform, often thought to be too technical. The recent comment made by PhRMA states that “patient groups and other stakeholders interested in participating in the patent prosecution process can use existing mechanisms to submit printed publications that are relevant to the examination.” We disagree, the current mechanisms are extremely difficult for the general public to engage in processes such as third-party art searches and more. Many patient groups do not know that public feedback mechanisms exist so there must be more public awareness and dissemination. Existing mechanisms and the status quo are not working for those who are not in the business of creating and patenting pharmaceuticals and medical devices and we want that to change. The USPTO currently makes extensive efforts to help small inventors engage with and understand the patent system, and similar outreach could be extended to patient communities. 

And for the few of us who have found ways to participate in the formal regulatory processes, it is unclear on the follow-up of feedback from patient groups. Moreover, patent examiners are unlikely to give prior art submissions from third parties substantial consideration, but they may still cite those submissions on patents when they issue. That is a problem because district courts are less likely to invalidate and the Patent and Trial Appeal Board is less likely to review patents based on cited prior art. As a result, submitting strong prior art during examination is more likely to prevent than ensure its consideration. As patients, and consumers, we feel a deep urgency to introduce novel, meaningful patient engagement opportunities within this collaboration. Furthermore, opportunities for patient engagement should be accessible, including providing opportunities for virtual participation.

We also wish to note the importance of hearing from patient groups that are independent of industry funding or have displayed a clear firewall between industry funding. We have noted the silence of many patient groups when it comes to pharmaceutical policy, notably because of the significant financial support these groups receive from the pharmaceutical industry. To evaluate and provide unbiased decisions to the USPTO and FDA, patients or patient groups must be required to prove industry independence. 

The USPTO should ensure that patient engagement opportunities allow for true input and patient involvement should be respected and considered. Equitable representation of patients should be of paramount importance. There are several core principles of ethical engagement, highlighted by T1International, including compensation, diversity of voice, and patient-led strategies. Some notable questions they include are: 

1. Are you compensating patients as experts?

2. Have patients been involved in planning, leadership, and creating the overall strategy? 

3. Have you informed patients of the purpose behind their participation? 

4. Is there a clear plan for how patient contributions will inform any work moving forward? 

An example that could be referenced as a strong model for engaging patients is the Institute for Clinical and Economic Review. Within this model, patient advocates are part of the voting councils and are allowed to vote as other healthcare professionals. Patient advocates on the voting council receive the same payment and are given the same opportunities to speak and ultimately evaluate the evidence from a patient-centric perspective for all appraisals.

In order to better incorporate patient voices in the patenting process, we suggest the creation of a pharmaceutical-specific art unit, as suggested by Professor S. Sean Tu. Applicants should be required to ex ante disclose applications that could be listed in the Orange Book or Purple Book for examination in a specialized art unit. This would allow patient advocates to voice their opinions on those patents that would affect their specific indications. Currently, it is difficult to determine which patent applications are relevant. We note that this should not be difficult to implement since the smallest molecule Orange Book patents originate from two art units in Workgroup 1610 and most biologics originates from two art units in Workgroup 1640.  

The patient voice must be genuinely and meaningfully incorporated early relating to the implementation of this collaboration. We look forward to partnering and working closely with both agencies in ensuring that the American public is prioritized. 

Sincerely, 

Asian Americans with Disabilities Initiative

Chronic Illness Advocacy & Awareness Group

Consumer Action

Connecticut Health Policy Project 

Connecting to Cure Crohn's and Colitis 

Crohn's and Colitis Young Adults Network 

Disability Rights California

Doctors for America

e-Patient Dave, LLC

Fight Like A Warrior 

Generation Patient 

Health Care Voices

IBDMoms 

Initiative for Medicines, Access, and Knowledge

Islamic Civic Engagement Project 

National Alliance of Multicultural Disability Advocates 

Oregonizers

Patient Safety Action Network

People With Empathy 

Propel a Cure

Sumaira Foundation 

T1International 

The Light Collective 

Tigerlilly Foundation

Universities Allied for Essential Medicines

USA Patient Network

U.S. PIRG (Public Interest Research Group)

Job Posting!

Title: Administrative and Program Assistant 

Classification: Full-time (40 hours per week) or Part Time (20 hours per week) available. Note that we prefer full-time applicants. 

Location: Remote, US-based

Salary: The annual base salary range for this position is approximately $40,000 - $55,000 full-time. The salary offered will be determined according to a salary scale that takes into account years of experience, location, job category, and other factors.

Benefits: Paid leave on all bank holidays observed by the Federal Reserve System. Flexible hours. Remote work. Position may be eligible for additional employee benefits as to be determined by Generation Patient.  

About the role

The role of the Administrative and Program Assistant is to support in managing internal and external communications across Generation Patient’s portfolios. This is a new role with a small team. It is important to note that all of the programs and duties do not happen simultaneously but seasonally. 

This role will report to the executive director. Generation Patient is a remote office environment so you should be able to work from home. 

Responsibilities

Program Management - 50%

• Manage the Crohn’s and Colitis Young Adults Network Fellowship 

• Editing and updating monthly CCYAN Fellow content 

• Coordinating and leading monthly fellow speaker meetings

• Primary communicator for the IBD Medical student scholars  

• Prepare logistics for the Roundtable on Young Adults with IBD Meeting  

• Coordinate meetings for health policy scholars 

• Coordinating six peer support meetings per month, including evaluation tracking.  

Communications - 25%

• Organize speaker communications and outreach partners for the virtual Summit 

• Oversee donor communications and updates by email, virtual meeting, and more to increase support 

• Create presentations as needed, such as for the board meetings

• Support with team Communications, including events and writing newsletters

Project Management and Admin - 25%

• Project Manage the implementation of Salesforce for Fundraising, working with the Operations Manager and Development Coordinator to ensure that the platform meets the Development team's needs, entering data, and pulling reports and stats

• Maintain documentation about grant reports and timelines 

• Lead on annual impact report content drafting, document design, and final report distribution

• Other duties, as assigned

Qualifications

• Ability to thrive with little direction in a startup nonprofit environment

• Preferable to have experience in public health, health policy and working with small teams

• Preferable to have lived experience with chronic disease or illness

• Preliminary knowledge of health policy, a strong understanding of intersectional social justice issues. 

• Willingness to support other aspects of Generation Patient 

• Comfortable moving between big-picture concepts and fine details to both strategically plan and execute work to a high standard

• Strong communication and collaboration skills, including writing and editing

• Familiarity and experience with a range of communications tools and approaches (Canva, Mailchimp, Action Network, Gmail Templates, etc.)

• Excellent organizational and administrative skills and keen attention to detail, especially while managing multiple projects and deadlines

• Ability to prioritise and work independently to deadlines and goals

• Strong critical thinking skills and problem-solving ability with good, independent judgment

• Able to work efficiently and independently as well as collaborate effectively with others; we are looking for someone who can follow set processes to take work forward - someone with a ‘let’s make this work attitude who is willing to ask for help when needed

• Flexibility to change role duties as needed 

• Excels with online tools including Google Workspace, social media, and database programs

• English fluency 

• Excitement to work with a team of young adult patients 

About Generation Patient

Generation Patient is a nonprofit organization empowering adolescents and young adults with chronic conditions. As an entirely young adult patient-led organization, we focus on areas of peer support, higher education, health policy, and more. Programs through Generation Patient include the Crohn’s and Colitis Young Adults Network and the Health Policy Lab. Furthermore, we are fully independent of healthcare industry funding, ensuring the integrity of our work and perspectives. 

To apply

Please submit to virtual@healthadvocacysummit.org:

1. CV (3 pages max)

2. Cover Letter addressing qualifications (2 pages max)

3. Three references, including name, position, and contact information. 

Incomplete applications will not be considered.

Process

Applications will be reviewed on a rolling basis, and only shortlisted candidates will be contacted. For your application to be considered in the first review, please submit it by February 10, 2023. 

The application process will include at least two Zoom interviews and potentially more written materials. 

We encourage young adults with chronic medical disabilities to apply. We are an equal-opportunity employer. 

Generation Patient’s USPTO/FDA Comment

Dear Commissioner Califf and Director Vidal: 

Generation Patient was created—and is led entirely—by young adult patients. Through our nonpartisan work and focused initiatives—the Health Policy Lab and the Crohn’s and Colitis Young Adults Network —we work to increase the health literacy, confidence, self-management skills, public policy knowledge, and advocacy strategies of young adult patients. We have developed programming related to navigating the higher education landscape as well as educating people about health policy with independent research and analysis. Additionally, we have facilitated more than four hundred virtual meetings and events during the past two years focused on connecting young adult patients around the world and providing them with critical peer support. Our organization does not accept funding from the pharmaceutical, insurance, hospital, or related healthcare industries. 

Through our only disease-specific program, the Crohn’s and Colitis Young Adults Network (CCYAN), we work to empower adolescents and young adults with inflammatory bowel diseases. Humira, a medication needed by many in our CCYAN community, has been granted 166 patents and has delayed biosimilar entry until 2023 in the U.S. This is just one of many examples which illuminates the need for the USPTO-FDA Collaboration. 

We appreciate this opportunity to address the USPTO and FDA Public Listening Session. The following points are divided into sections based on what we feel is most critical to address. 

Engage patient stakeholders 

Patient stakeholders are critical but are often underrepresented as equal stakeholders in policy and regulatory discussions. The USPTO and FDA must have accountability to those most impacted, patients, in all aspects of the collaboration. We recommend the development of an independent public advisory committee, inclusive of patients who represent areas from chronic to rare diseases, different age groups, and more. This independent public advisory committee could play a critical role in advising on public dissemination of information, best practices for engaging the public and patient stakeholders, and ways in which this collaboration could be even more patient-centered. We commend that the FDA already has a variety of existing patient engagement opportunities. Rather than just having patients serve on separate patient councils, we encourage the integration of patients in all core activities of this collaboration. We also wish to encourage the foremost engagement of individuals and organizations that are independent of pharmaceutical industry funding. Further, as part of an advisory council, we uphold that patients must be compensated for their time and experience to ensure that there is an equitable representation of who can provide this insight. 

Value-based patents 

Before a patent extension is granted, it is important to understand what benefit the drug actually has on patients. Does a secondary patent meaningfully increase the clinical benefit and pose a transformative impact on patient quality of life? We have to acknowledge the misuse of patents to extend market exclusivity through evergreening. Modifying a drug without a meaningful impact on the utility proves unnecessary in improving patient lives. Should it warrant a new patent that allows drug manufacturers to continue escalating the cost of lifesaving drugs for patients? As patients, we need novel medications, not the ones we have already tried and which have not worked for us. When we reward pharmaceutical companies with new patents on old drugs, we remove the financial incentive to do the hard work to find truly novel treatments and cures.

FDA and USPTO should establish channels for sharing information about an applicant

Patent examiners should have access to a wider array of information when conducting prior art searches, including updated information from the Orange and Purple Books, FDA decisions, and scientific information. We also recommend that when considering secondary patents, sponsors can be better held accountable to share robust evidence, diversity in clinical trials, and adequate documentation of safety data earlier on. 

This a unique opportunity to advocate for children, adolescents, and young adult patient populations 

Through this collaboration, we believe there is an opportunity to place an emphasis on pediatric, adolescent, and young adult populations, patient populations that have historically been left behind within clinical research. We encourage novel ways of thinking to incentivize pharmaceutical companies to truly innovate to develop drugs for pediatric populations.

Further, there must be better incentives for evidence generation earlier rather than nearing the end of an initially granted patent. A study showed that approximately 1 in 10 pediatric trials ended early and that the results of the majority of these had not been published even three years later. We feel that the incentive is low for actually completing pediatric studies, rather it feels like there is a simple “encouragement” of earlier pediatric research, without actual timely completion. We suggest a sense of urgency for creating a collaborative system in which there is a true incentive to bring pediatric-approved therapeutics to market, rather than creating opportunities to delay generic/biosimilar competition.  

We also wish to note that when the patent system is misused and when me-too drugs are created, our demographic of young people with chronic conditions is disproportionately affected. We run out of treatment options quickly and we have a lifetime ahead of us. We need novel innovation, fairly priced. 

Over 85% of young people with chronic conditions are now surviving into adulthood, many of whom live with complex, lifelong conditions. For us as young adult patients, access to prescription medications is a basic human need. According to the Georgetown University 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. This collaboration is a unique opportunity to ensure the adequate representation of young adult patients within actions to make medications more affordable. 

We welcome elaborating on any of the above and continuing to partner with USPTO and FDA to include patients at the forefront of all actions taken through this important collaboration. 

Sincerely,

The Generation Patient Team

Access the PDF version of our comment here.

New resource guide for young adults with chronic conditions transitioning from pediatric to adult care

Click here to see our new resource guide: Transitioning from Pediatric to Adult Care (While Transitioning to College)!

This resource guide discusses the transition from pediatric to adult care and is primarily focused on young adults who are making this transition while also transitioning to college, as these events often occur simultaneously. However, please note that everyone’s disease journey is different, and it’s best to speak directly with your current physician and clinical care team to determine if and when would be the appropriate time to transition from pediatric to adult care. 

Our guide provides tips on…

• Switching providers while moving to college and seeking out a new clinician

• Items to complete and consider before your first visit

• Adjusting to a new clinical care team

• Registering to receive accommodations on your college campus along with examples of helpful accommodations you may be able to receive

For questions, comments, or to suggest/request any other resources, please contact Generation Patient’s Higher Education Coordinator, Amy Bugwadia, at amy@healthadvocacysummit.org. 

Part Two: Things Young Adult Patients Wish Medical Professionals Better Understood

#7: Even when our parents are with us at an appointment we should still be the one being addressed/spoken directly to. We are the patient, it is our health.

#8: It can be hard for us to trust a new physician at first. Building the patient-provider relationship is key.

#9: It is okay to admit you don’t know everything about our condition(s). We respect honesty over uninformed treatment.

#10: We would like to understand all of our treatment options, rather than only getting an explanation of the one you were recommending.

#11: Asking questions can feel intimidating. Leaving allotted time for addressing our concerns is very helpful.

#12: We know you cannot fully understand our experience with our illness, but a little empathy goes a long way.

Part One: Things Young Adult Patients Wish Medical Professionals Better Understood

#1: What works for one patient doesn’t always work for another, even if they have the same symptoms/illness.

"…the one size fits all approach shouldn't apply to all aspects of patient care. While efficiency is important, the practice of algorithmic medicine doesn't necessarily lead to better outcomes. In fact, it can lead to missed symptoms, misdiagnoses, and unnecessary tests…when facing patients, it's best to focus on their individual symptoms instead of lumping them into a category."

Source: https://www.carecloud.com/continuum/standardized-care-does-one-size-fit-all-in-medicine/

#2: Just because we are young does not mean we cannot have a serious illness.

"Unlike older patients, younger patients more often experience undertreatment due to their age. Young people 'aren't supposed to' get certain diseases, according to medical books and statistics, but they do — time and time again. Because of this, inappropriate assumptions are made, and they're often dismissed."

Source: https://intivahealth.com/blog/the-rising-problem-of-ageism-in-healthcare/

#3: Mental and physical illness can coexist. They are not mutually exclusive.

#4: When a provider rushes through an appointment, we often feel like we are not cared about and/or our concerns are not being adequately heard.

#5: We may be your patient, but first and foremost we are human. When we are treated in a cold and clinical nature it can often feel apathetic.

#6: We want to feel like you’re working with us on a treatment plan, rather than just being told what and what not to do.

Check out our forum on the fundamentals of health economics!

On October 18th, our (Health) Policy Lab hosted the first forum of a three-part series on health economics! This series focuses on the intersections of health economics and the impact of policy decisions on prescription drug pricing and is made possible with support from the Kazanjian Economics Foundation.

Check out Forum 1: Fundamentals of Health Economics featuring Benjamin Rome, M.D., MPH, instructor of medicine at Harvard Medical School.

Don’t forget to register for Forum 2: Applications of Health Economics here!

And check out this video to see how you can earn a Health Economics Certificate!

Resources for young adult patients from our Virtual Health Advocacy Summit!

Dysautonomia:

• What is POTS

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

• Dr. Pace/Metrodora Institute

https://www.metrodora.co/

• Dysautonomia International

https://dysautonomiainternational.org/

• Facebook Support Groups

https://dysautonomiainternational.org/page.php?ID=24

• Dysautonomia Clinic/Dr. Blitshteyn

https://www.dysautonomiaclinic.com/

Art Workshop:

• http://www.dariangoldinstahl.com/

• https://nativelands.ca/

Medical Trauma and Growth:

• Dr. Amanda Feinstein - Yoga on YouTube

https://www.youtube.com/channel/UCUmfgP-b0hK7-SsS0N2oAxw

• Better Sleep App

https://www.bettersleep.com/

• National Alliance on Mental Illness (NAMI)

https://www.nami.org/Home

• National Suicide & Crisis LifeLine: Call or text 988 or chat

988lifeline.org

• American Psychology Association

https://www.apa.org/topics/mental-health/help-emotional-crisis

• SAMHSA’s National Helpline

https://www.samhsa.gov/find-help/national-helpline

Free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing a mental health crisis. 1-800-662-HELP (4357) or TTY: 1-800-487-4889

• Crisis Text Hotline: Text “HELLO” to 741741

Available 24 hours a day, seven days a week throughout the U.S. Serves anyone, in any type of crisis, connecting them with a crisis counselor who can provide support and information.

Grassroots Activism:

• Asian Americans with Disabilities Initiative

https://www.aadinitiative.org/

• Health Justice Commons

https://www.healthjusticecommons.org/

• MAD - Mutual Aid Diabetes

https://mutualaiddiabetes.com/

Decolonizing Patient Advocacy:

• Chronic Pain India

https://chronicpainindia.com/

• Africa Sickle Cell Organization

https://africasicklecell.org/

• Crohn's & Colitis Ethiopia

https://ibdeth.org/

Diagnosed: Grief, Identity, Acceptance:

• Crohn’s and Colitis Young Adult Network

https://www.ccyanetwork.org/

• Generation Patient Virtual Community Meetings

https://generationpatient.org/virtual-meetings

Neurodivergence Resources:

• AASPIRE Healthcare Toolkit

https://www.rwjbh.org/documents/csh/AASPIRE-Healthcare-tool-kit.pdf

• Autistic Self Advocacy Network (ASAN)

https://autisticadvocacy.org/

https://morenikego.com/projects/

https://aaspire.org/

Global Access to Medicines:

• Universities Allied for Essential Medicines

https://www.uaem.org/

• Generation Patient’s (Health) Policy Lab

https://www.hplab.org/

Higher education resources from Generation Patient:

• Accommodations 101/Overview

https://docs.google.com/document/d/1HM0BgrNEq8aOS7VasV6hpALcquv4BaELTTVfgRxlRNo/edit

• Accommodations Letter Template from Your Doctor/Clinician

https://docs.google.com/document/d/1ffxzmr60rnyXpG08ngTrLKhL3vucRASc0fGhsnGdWvA/edit

• Proceedings: Roundtable on Higher Education and Chronic Medical Disabilities

https://static1.squarespace.com/static/5c11eb6ab40b9daef16158a9/t/627b11e9737ecf2abbc4bf81/1652232690402/Roundtable+Proceedings.pdf

Movement and Mindfulness:

• Noa Porten’s class schedule and newsletter

https://mailchi.mp/376135183f7c/noa

Closing Session with Selma Blair and Troy Nankin:

• You can watch the documentary Introducing, Selma Blair on Amazon Prime and Discovery+

• See Selma on Dancing With the Stars, all-new episodes Mondays at 8p ET/5p PT on Disney+

• You can also check out Selma’s memoir Mean Baby: A Memoir of Growing Up which is also available on Amazon

Attention young adult patients—there’s still time to register!

Young adults living with chronic illness face countless obstacles and challenges. The stigma, biases, structural issues and so much more are enough to feel overwhelming to anyone. On top of that, feeling alone in these experiences amplifies this overwhelm.

Finding a place to talk about all of these challenges and connect with others who have gone through similar can help remind you that there are people here to support you. Our Health Advocacy Summit brings together a global community of young adult patients for support, empowerment, and connection. We hope that attending this event is the first step to joining our growing community.

Register today: https://events.zoom.us/e/view/Kup8VX3fQi6WAQ3mduxtOw

Selma Blair is Back for our 2022 Virtual Summit!!

We are honored to have the opportunity to welcome Selma Blair back to our Virtual Health Advocacy Summit for the second year in a row!! This year’s closing session will be a conversation between Selma and her friend and manager, Troy Nankin.

Selma is an incredible actress and advocate with a long-standing career including roles in films such as Cruel Intentions, Legally Blonde, and Hellboy, to name a few. In the fall of 2021, she shared her experiences living with multiple sclerosis in the documentary, "Introducing Selma Blair." This year, in addition to publishing her memoir, “Mean Baby”, Selma is taking on a new challenge by competing in Season 31 of Dancing with the Stars.

Join this incredible discussion between Selma and Troy during our final session on October 1st. Register today for our third annual Virtual Health Advocacy Summit happening September 29th - October 1st!

This is a free, international event for young adults with chronic and rare conditions with sessions focused on topics such as dysautonomia, neurodivergence, medical trauma and growth, decolonizing patient advocacy, health policy and SO much more. Questions? Email us at virtual@healthadvocacysummit.org.

Press Release: Roundtable on Young Adults with IBD and the IBD Medical Student Scholar Program

The Crohn’s and Colitis Young Adults Network (CCYAN), is an international online fellowship program and community space for young adults with inflammatory bowel disease (IBD). Today, the CCYAN officially launches its Roundtable on Young Adults with IBD alongside its IBD Medical Student Scholar program. Both initiatives are made possible with funding provided by the Helmsley Charitable Trust, the largest private funder of research into Crohn’s disease, a form of IBD. 

Adolescents and young adults with IBD are a growing demographic worldwide. With over 25% of IBD patients diagnosed before age 16, there is an urgent need to holistically address the unique challenges these patients face as they transition into adulthood. The Roundtable on Young Adults with IBD is a yearlong learning community comprised of monthly discussions between patients and providers and seeks to improve outcomes for the young adult IBD-patient population.

“This programming comes at a time when IBD is impacting younger populations at a growing rate. While young adults make up a significant portion of IBD patients, they have been routinely left out of discussions within the medical space,” said Sneha Dave, founder of CCYAN. “We are proud to use our lived experience to bring unique stakeholders together to better outcomes for young adults with IBD.” 

Each monthly discussion will focus on an issue that is specifically pressing among the young adult IBD demographic — including medical trauma and behavioral health, disordered eating, comorbidities of IBD, peer support interventions, and intersecting identities. Each will be led by one young adult IBD patient and a clinician or scientist with experience in IBD. Written proceedings with key takeaways will be posted after each meeting on the CCYAN website, and a report will be published at the end of the year to summarize critical information from the proceedings. 

"The Helmsley Charitable Trust’s Crohn’s Disease Program’s mission is to improve the lives of people living with Crohn’s disease. Young people with IBD face unique and urgent challenges, and the CCYAN’s Roundtable and Medical Student Scholar program are critical to building community and helping medical providers understand and address these challenges” said Terry Felton, Program Officer from the Helmsley Charitable Trust.

In tandem with this Roundtable, the CCYAN is also initiating its IBD Medical Student Scholar Program, a novel program for medical students interested in the field of gastroenterology to learn about the global challenges and needs of adolescents and young adults with IBD by participating in the Roundtable. The active participation of medical students is paramount in disseminating the unique needs of young adults with IBD throughout the medical community. These Student Scholars will be empowered as future medical professionals to understand and engage with young IBD patients throughout their careers. 

To learn more about the Roundtable on Young Adults with IBD please visit www.ccyanetwork.org/roundtable or if you would like to become an IBD Medical Student Scholar, you can access the application at www.ccyanetwork.org/medical-student-scholars.

About the Crohn’s and Colitis Young Adults Network

The Crohn’s and Colitis Young Adults Network facilitates (CCYAN) a fellowship program and community space for young adults with Inflammatory Bowel Diseases around the world. The CCYAN is led entirely by young adults with IBD and is a program through Generation Patient.

About The Helmsley Charitable Trust

The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional efforts in the United States and around the world in health and select place-based initiatives. Since beginning active grantmaking in 2008, Helmsley has committed more than $3.6 billion for a wide range of charitable purposes. Helmsley’s Crohn’s Disease Program supports impactful ideas and mobilizes a global community committed to improving the lives of Crohn’s disease patients while pursuing a cure. For more information, visit helmsleytrust.org.

Promoting Self-Advocacy for Young Adults With Chronic and Rare Conditions

The Generation Patient team is honored to have the opportunity to write an editorial on our work promoting self-advocacy for young adults with chronic and rare conditions. Click here to read our editorial in the Journal of Pediatric Nursing.

“The messages conveyed in this editorial are timely as evidenced by the growing numbers of individuals with childhood acquired conditions entering adulthood. The importance of what is presented in this editorial cannot be understated as it comes from the most experienced experts themselves-those who have lived and breathed the life of a person with childhood and young adult-acquired chronic conditions.”