Generation Patient Senate HELP UFA Requested Revisions

Dear Chair Murray and Ranking Member Burr,

Generation Patient is a nonprofit focused on empowering the next generation of patients, led entirely by young adults with chronic and rare conditions. Our work has touched regions across the country. Through our nonpartisan 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 250 virtual meetings during the past two years focused on connecting young adult patients around the world and providing them with critical peer support.

As one of the very few industry-independent patient advocacy nonprofits, we want to emphasize that the following requested revisions are critical to us as patients diagnosed entering adulthood with lifelong chronic medical conditions. We are grateful for the opportunity to provide feedback on legislation that will directly impact us.

Clinical Trial Diversity

Over 85% of young people with chronic conditions are now surviving into adulthood, many of whom live with complex, lifelong conditions.1 Young adulthood is a pivotal time of transition and growth and is an area that needs extended investigation and representation within clinical trials. Ethical research of young people should focus on two goals: protection from research risk and appropriate inclusion in clinical research that will improve our understanding of therapeutics.2 User fee agreements should include narrow age reporting requirements in clinical trial applications and post-market activities. Any legislation pertaining to clinical trial diversity must explicitly include developmentally age-appropriate clinical trial stratification. For above 18, we suggest 18-26 and as separate age categories and 27-35. Age must also include the further intersection of underrepresented minorities.

The ages of participants in clinical trials should be made clear and should be representative of the patient population for the chronic condition. The young adult population must be proactively included as are adults within clinical trials. As more of us are diagnosed at younger ages, it is imperative that young adult patients are represented within all aspects of clinical research. It is unreasonable to assume similar efficacy and safety of an intervention on young adult patients who are underrepresented in testing for this intervention.

Furthermore, age should be an included factor as is race, ethnicity, and other critical areas of diversity. We recommend the inclusion of takeaways from the recently launched “Improving the Representation of Women and Underrepresented Minorities in Clinical Trials and Research” to further include the urgent necessity of including underrepresented minorities in clinical research.3 In addition, it is imperative that the public is aware of any diversity plans from medical sponsors in a timely manner.

Adverse Event Reporting

Language in the legislation focusing on updating and developing better adverse event reporting mechanisms must be expanded upon. Per the current FDA Adverse Event Reporting System (FAERS) dashboard, 18-year-olds and 64-year-olds are included in the same category. There is a massive physical difference between an 18-year-old and a 64-year-old. We recommend changing FAERS to 18-26 years old and 27-35 years old to better capture unique developmental periods. Young adult patients must be treated substantially differently than adults or older adults and must be recognized as an individual age demographic. More attention should be emphasized to adverse event reporting as it pertains to age-specificity.

Pharma Direct-to-Consumer-Advertising on Social Media

The legislation should include a section on direct-to-consumer advertising (DTCA) of medical products, particularly on social media. At the very least, the legislation should include that the FDA should issue guidance on the emergence of pharma DTCA on social media, particularly TikTok and Instagram. Given that younger people are utilizing social media more often, there must be greater discretion on the ways that prescription drugs are being advertised on these channels. The largest age group using Instagram is aged 25-34 at 31.2% and the ages of 18-24 at 31%. On TikTok, the largest age demographic of users is 10-19.4 There are many challenges with DTCA, for example, the unregulated comment sections of prescription drug advertisements and the lack of clear and distinguishable advertisement disclosure. Additionally, micro-influencers (accounts with around 10,000-50,000 followers) on social media appear to be an emerging avenue through which pharmaceutical companies promote their prescription drugs, using their smaller platform and more authentic point of view to appeal to their audience. The industry clearly recognizes the power of these influencers, particularly on the Generation Z patient demographic, and the FDA must catch up to the speed at which the industry is adapting various outlets. In summary, we suggest the following as it pertains to pharmaceutical social media DTCA. 

• The FDA should work with patients and influencers to issue updated guidance on specifically pharma DTCA within social media. More oversight and research are necessary for social media DTCA.

• The FDA should host an updated public hearing about pharma DTCA in conjunction with the FTC and the public, including independent stakeholders.

• The Office of Prescription Drug Promotion should conduct studies like this and this to extend to the impact of pharma DTCA on social media.

Social media has a large influence on users and thus must be identified as an urgent and emerging pathway that the FDA should proactively investigate as it pertains to prescription drugs.

Thank you for the opportunity to submit feedback and we look forward to collaborating on these urgent issues impacting our patient community.

Sincerely,

Generation Patient

Citations

1. Yeo M, Sawyer S. Chronic illness and disability. BMJ 2005;330(7493):721-3. DOI: 10.1136/bmj.330.7493.721.

2.  Kapogiannis BG, Mattison DR. Adolescents in clinical trials. Clin Pharmacol Ther 2008;84(6):655-9. DOI: 10.1038/clpt.2008.191.

3.  National Academies of Sciences E, Medicine. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups.  2022.

4.  Barnhart B. Social media demographics to inform your brand’s strategy in 2022

Generation Patient Publishes Proceedings Following Roundtable on Higher Education and Chronic Conditions

SAN FRANCISCO, May 11, 2022 /PRNewswire/ -- Generation Patient, a nonprofit that facilitates events, meetings, and programs to empower young adults with chronic conditions, has published proceedings that summarize the findings from their Roundtable on Higher Education and Chronic Medical Disabilities.

This two-part Roundtable was held as an initial effort to address the substantial lack of awareness, research, and resources at the intersection of higher education and chronic medical conditions. The Roundtable brought together both students and higher education professionals to recognize the unique learning and socioemotional needs of college students with chronic medical disabilities, as well as identify the current barriers within the higher education system.

"Students with chronic medical disabilities are an under-researched and under-resourced community, despite the fact that their future quality of life can depend on their ability to pursue postsecondary education," said Amy Bugwadia, Generation Patient's Higher Education Coordinator. "This Roundtable set the groundwork for us to change that by centering the voices of students with chronic medical disabilities and other key stakeholders. Ultimately, we hope to help create a higher education space that welcomes and supports these students." 

Topics discussed include the current gaps in research and resources, existing structures and opportunities for change, accessibility and inclusion within student life, and promoting a campus culture that embraces students with chronic medical disabilities.

The proceedings share about the critical discussions that took place during the Roundtable and highlight the major themes that came about during these sessions. They also include recommendations for higher education institutions and professionals with regard to creating a more accessible and inclusive environment on campus for students with chronic medical disabilities.

To learn more, visit https://generationpatient.org/roundtables.

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Written Comment to the U.S. House of Representatives Committee on Energy and Commerce

Written Comment Generation Patient

Submitted to the U.S. House of Representatives Committee on Energy and Commerce

March 17, 2022

The Future of Medicine: Encouraging Innovation while Improving Oversight

Generation Patient represents young adults with chronic and rare conditions across the United States. We are the only organization exclusively supporting the transition of this demographic cohort with lifelong health conditions into adulthood. Our organization does not accept funding from the pharmaceutical, insurance, hospital, or related healthcare industries. We appreciate this opportunity to address you about critical issues affecting young adult patients.

Generation Patient was created—and is led—entirely by young adult patients. Our work has touched regions across the United States from South Texas to Indiana to California.

Through our nonpartisan policy outreach and networking initiatives—the Health Policy Lab and the Crohn’s and Colitis Young Adults Network—we work to increase the health literacy, patient knowledge, skill, and confidence for self-management, and the public policy advocacy skills of young adult patients. We have facilitated more than 200 virtual meetings during the past two years and programming related to navigating the higher education landscape, peer support, and educating others about health policy with independent research and analysis.

As an organization, Generation Patient is concerned about the pharmaceutical industry’s failure to include significant numbers of adolescents and young adults with chronic and rare conditions in clinical trials. We support efforts to diversify clinical trials by explicitly including these patients. We know there are substantial differences among pediatric, adolescent, and adult patient populations in terms of drug disposition and response (Kapogiannis & Mattison, 2008). We also believe the inclusion of adolescents and young adults should be done in a racially diverse and inclusive manner.

Because adolescence and young adulthood are such distinct developmental periods, we believe post-market reported data from clinical trials should be stratified across narrower age ranges. For example, the U.S. Food and Drug Administration’s Adverse Event Reporting System reports 18 years old to 64 as a single demographic, and this does not allow for the understanding of how a drug products affect young adults versus older adults. More relevant insights regarding young adults could be gleaned from narrower reporting of adverse events involving 18- to 26-year-olds. Such an approach would ensure a focus on developmental differences. An 18-year-old body is physically different from that of a 60-year-old. One such approach could involve the FDA developing clinical trial enrollment targets that adequately represent the demographic spread of patient populations experiencing specific chronic conditions. To ensure enrollment of patients who are Black and brown, the FDA should require drug companies to meet more stringent enrollment criteria. Generation Patient believes such a requirement could expedite the enrollment of these underrepresented groups rather than simply relying on the drug trial sponsors.

The FDA also should ensure the prompt public release of post-approval clinical drug trial data. Patients need and deserve this information. Generation Patient supports the agency’s authority to quickly withdraw an accelerated approval drug to prevent patients from being harmed.

Our organization supports the concept of a Rare Disease and Drug Advisory Committee. Many of us at Generation Patient live with rare diseases. We cannot overstate the essential role of patient voices in these conversations. We recommend that members of such advisory groups maintain the integrity of the advisory process by disclosing potential and actual conflicts of interest, including any payments from the pharmaceutical industry. Independent patient leaders from an array of age and racial or ethnic demographic groups should serve in such advisory capacities to ensure patients’ interests are fairly represented. Most of the approximately 7,000 to 10,000 people with rare diseases are disproportionately children, adolescents, and young adults (Tisdale et al., 2021). Thus, we believe the voices of young adults will be critical to any advisory committees.

For young adults living with medical conditions that could potentially last a lifetime, developing new therapeutic options is extremely important. Many of us have been diagnosed with rare and complex medical conditions for which treatment options are limited. Our lives and quality of life depend on real innovation and the prompt development of alternative treatments. Although we need new therapeutics, we also need to ensure the integrity of the clinical trial and post-market processes. We hope that today’s discussions will prioritize patient safety and engagement in testing and ensuring the safety of new drugs.

Thank you for your time and to all parties for contributing perspectives. We applaud the work of the House Committee on Energy and Commerce in facilitating discussions that directly benefit patients. As the emerging generation of patient advocates, we hope our perspectives will be strongly considered, and we would be pleased to elaborate on our prepared testimony.

My Experience: Young Adults with Chronic Conditions Need More Support

By Rob Schmidt

Most young adults go through a crisis in their twenties trying to figure out how to create a life for themselves, but throw a chronic illness into the mix and those already tough decisions become that much more complicated. 

People can get diagnosed with a chronic illness at any age in life and I am one of a growing number of people to be diagnosed with such an illness during my childhood. Just as character and morals change with age, the relationship with your disease changes as well. In my experience, you truly do not realize how much your disease impacts you until you transition into adulthood and experience “real life.”

I was diagnosed with Crohn’s disease when I was five years old. When diagnosed with a chronic illness at such a young age, it’s difficult to fully grasp what that actually means. All I knew was that I was sick, and I needed to take medicine to feel better. My parents made all of the decisions regarding my treatment since I was obviously too young to do so. While I was not physically able to do all of the things “normal” kids could, like play sports or just be a crazy kid, I feel that the effects of my illness at that stage in my life were strictly physical. I was still a hopeful child with lots of love and imagination, and even when I was not feeling well I was still content as long as I was in a happy and safe environment. 

The mental impacts would come later on in life.

In high school, I started becoming more involved in my treatment process and it was at this point that my condition started to have more of an impact on my mental health. I began to realize that my condition limited my choices and certain things I wanted to pursue. Still, things were fairly manageable for me. I had time to rest when I needed to, and no serious responsibilities or major commitments. It wasn’t until I was in college that I truly realized just how severe my Crohn’s was and is, and just how much it interferes with my daily life. 

While I was becoming more mature and independent, and learning how to advocate for myself, I also began to experience major stress and anxiety on a frequent basis. School became more challenging and time-consuming, and I began to take on more responsibility with internships, research, etc. Despite all of this, I was still able to manage any inconvenience that arose due to my condition. My college offered exceptional accommodations, my professors were understanding as long as I communicated with them, and there were usually resources available such as dieticians, campus social workers, and so on. If I began to feel overwhelmed, I could simply take on fewer activities that semester and focus on what I could handle without sacrificing my health. This environment allowed me to remain confident and hopeful that my future would not be severely limited due to my condition.

That changed once I became a college graduate and was ready to step into the workforce. Suddenly, I was confronted by scenarios that presented challenges and barriers I had not anticipated. 

For example, what happens when those symptoms that made my life extra difficult begin to interfere with my work? Instead of skipping class when I’m in a flare, I would now be limited to a certain number of sick days. Deadlines are typically no longer something that can be negotiated. One cannot simply take a break or take on less responsibility with their job for a certain amount of time to focus on recovering. I realized I would have to struggle through some days when I was flaring badly because I understood that flares would come repeatedly throughout my entire life, and I would need to save my leave time for doctor’s appointments or hospitalizations. 

Even if I came to the realization that I needed to make a change in my career, my freedom to do so would be limited with a chronic illness. Most young adults have the energy and capability of going back to school and taking night classes while working full time, or working a part-time job while learning new skills and focusing on a side hustle that will make them a better applicant for a different career. People do not realize that it is a privilege to be able to burn the candle at both ends, as they say, and those with chronic illness do not have the freedom to spread themselves thin like that. 

Not having to worry about things like health insurance is also a privilege that many young people take for granted. Those living with a chronic illness are much more limited in their career choice because they need to find something that offers good health benefits, and possibly short-term or long-term disability. Taking a risk and leaving a full-time job to start as an intern for a more suitable career may not even be an option for us as losing a position with benefits could cost us our physical health and more. And while many may have the advantage of staying on their parent's health insurance until the age of 26, this is not an option for everyone.

Trying to cope with the magnitude of so many uncertainties presents an enormous challenge for young adults living with chronic conditions and everyone handles it differently.

For a while, I thought that the best solution would always be to figure out how I can fake my way through the fast-paced, high pressures of modern society which seems to reward those who ignore their health and well-being. I have also witnessed many people in the chronic illness community push themselves beyond their limits in an attempt to keep up with society’s standards of grinding at their careers. They jeopardize their health until finally, they get to a point where surgery is their only option for continuing this lifestyle if they are able to continue at all.

On the other hand, I have also seen people achieve their goals and create the life they desire without putting their health on the line. For example, I know someone who worked as an ASL interpreter for many years, which was demanding at times and required a lot of travel. After her diagnosis with Crohn’s, she eventually changed her career to become a successful personal trainer, allowing her to work without sacrificing a healthy lifestyle or risking major surgery. I will not sugarcoat it and say that a transition like this would be easy, but I know it is possible! 

I’m telling you all of this because I firmly believe that you can create a life for yourself that gives you the most opportunities to be happy and healthy; you just have to understand that in order for this to happen your decisions need to be driven by your aspiration to thrive and not by your fear of failing. Which I understand is much easier said than done when you live with a chronic illness. 

I am still navigating how to create the life I want for myself and trying to figure out what exactly that even looks like. But I’ve realized that trying to fake a “normal” lifestyle is not a sustainable option and refusing to accept that my illness is a part of me only makes my life harder. I intend to face the challenges my illness presents head-on. In fact, accepting this new reality has opened the door to a whole new source of opportunities for me. I sought out the help I needed and was rewarded with support from my family and amazing people through organizations like Generation Patient and the Crohn’s and Colitis Foundation. I may not have it all figured out yet, but I feel I no longer need to suffer from living a life that does not serve me well, and that thought alone gives me hope that I am on my way to success.

Introducing the (Health) Policy Lab! Health policy education and advocacy for young adults with chronic conditions.

We are thrilled to announce the launch of our new program, the (Health) Policy Lab! The mission of this program is to provide health policy education and advocacy opportunities to young adults with chronic and rare conditions in an effort to increase meaningful access to prescription medications.

Over 85% of young people with chronic conditions are now surviving into adulthood, many of whom live with complex, lifelong conditions. Access to prescription medications is imperative now more than ever as more young people will rely on these medications for decades to come.

It is critical that meaningful access to prescription medications is not a barrier to the continued survival and quality of life of young adults patients.

To read more about the goals of this program, and to browse our resources, please visit www.hplab.org.

The Health Advocacy Summit is now Generation Patient!

Over the past few years, we have grown so much because of your support. Many of you know that we started out as an event in Indiana. We soon grew to hold annual events in South Texas, San Francisco, North Carolina and had plans to hold events in a few additional states in 2020. By this time, we were already planning how we could provide support beyond our annual events. While we have evolved considerably, there is so much more that we are looking forward to this year and beyond. For this reason, our overarching name is now Generation Patient, with the Health Advocacy Summit as the name of our events. Take a look below at our organizational structure - from our annual virtual event to six virtual community meetings per month to a fellowship program, and more, we are excited to grow our impact together for adolescents and young adults with chronic and rare conditions.

A word about the term 'patient':

We believe that the term patient should not reflect a person solely within the confines of the medical system; but throughout all the systems that the "patient" interacts with - whether that is higher education, work, navigating relationships, the healthcare system, etc. Society, and particularly the medical profession, should shift the understanding of what it means to be a patient, particularly the detrimental impact of institutional ableism. As young adults with various chronic and rare conditions, we have many transitions and our illness is a part of all of the systems we encounter. Given that the majority of our programs and opportunities are outside of the traditional medical system, we hope our name change will help redefine this term with better recognition of illness and its relationship to various systems that we encounter while entering adulthood.

While we are officially now Generation Patient, we will be undergoing this change slowly. Over the next few days, we will be changing our social media handles and making other logistical changes.

Advance Care Planning Resource for Young Adults with Chronic Conditions

SAN FRANCISCO, Oct. 19, 2021 /PRNewswire/ -- Health Advocacy Summit (HAS), a nonprofit that facilitates events, meetings, and programs to empower young adults with chronic and rare conditions has released a new resource about advance care planning.

Advance planning allows individuals to establish their wishes in the event that they are unable to do so in the future. Typically advance planning is attributed to seniors, but the HAS believes it is critical for all ages.

"As a young person with a serious lifelong condition, thinking about the future can be hard. There's a lot of uncertainty and no one wants to think about, let alone plan for, the worst scenario. But the unpredictability of our health is what makes advance care planning so important," says Sydney Reed, Director of Operations at the HAS. "These are crucial decisions regarding your quality of life that should not be made by anyone else."

The resource page includes a glossary to highlight important concepts in advanced planning, as well as talking points for individuals to consider. Furthermore, resource-seekers can find tools on how to select your healthcare agent or proxy and state-specific advance directive forms.

Throughout the COVID-19 pandemic, the HAS has served as a critical hub for young adults with chronic and rare conditions around the world. The HAS facilitates six virtual support meetings per month in addition to a variety of programming in higher education and civic engagement. Advance planning is the latest of resources, spearheaded by Gabrielle Labovitz, Head of Research and Resource Development at the HAS.

The HAS recognizes the lack of support and resources and is dedicated to uplifting adolescents and young adults with chronic and rare conditions around the world.

To learn more, visit https://www.healthadvocacysummit.org/advance-planning.

Selma Blair to Headline Event for Young Adults with Chronic Medical Disabilities

INDIANAPOLIS, July 7, 2021 /PRNewswire/ -- Actress and advocate Selma Blair (Legally Blonde, Mom and Dad, Cruel Intentions) will be headlining the second International Virtual Summit hosted by Health Advocacy Summit (HAS) for young adults with chronic and rare conditions.

Upcoming, Blair will be seen as the subject of the documentary, Introducing, Selma Blair, which premiered at the 2021 SXSW Festival, where the feature won the Special Jury Recognition for Exceptional Intimacy in Storytelling. The documentary, which reveals Blair's intimate and raw journey with Multiple Sclerosis, was acquired by Discovery+ and is slated for release in Fall 2021.

Throughout her diverse career, Selma Blair has been one of the most versatile and exciting actresses on screen. Blair's longstanding career began with her comedic roles in pop culture classics in the early 2000s. Blair has worked with an array of acclaimed directors including Guillermo del Toro and Todd Solodnz, to name a few. Additionally, Blair was named one of Time Magazine's Person of The Year in 2017 as one of their Silence Breakers.

Blair was diagnosed with multiple sclerosis in 2018 and has publicly spoken about embracing her diagnosis and building a positive connection with her body. She captivated worldwide attention when she embraced using a cane while walking the red carpet at an Oscars party. 

"Selma's presence at our second International Virtual Summit means so much to our community because many of us have felt invisible for so long," says Sneha Dave, executive director of the Health Advocacy Summit, who has been chronically ill since childhood. "The way Selma has described her diagnosis journey is so empowering for young adults who are growing up with these lifelong conditions." 

Roughly 20% of young adults in the U.S. live with a chronic medical disability. The HAS recognizes the lack of support and resources and is dedicated to uplifting adolescents and young adults with chronic and rare conditions around the world. The HAS is facilitating their International Virtual Summit, a two-day event focused on empowerment, resources and connection. 

The event will include other notable speakers and sessions focusing on global health policy, media representation of chronic illness, navigating the education system and more. It will take place on August 7-8, 2021 from 11 a.m. to 5 p.m. ET.

Registration is no-cost for young adults with chronic and rare conditions. 

To register visit: www.healthadvocacysummit-virtual.org

Our Second International Virtual Health Advocacy Summit!

On Saturday and Sunday, we will be hosting our second International Virtual Summit for young adults with chronic and rare conditions! This will be a two-day event dedicated to fostering strength, knowledge, and community among young adult patients across the globe. We are extremely honored and excited to have actress Selma Blair headlining this event alongside our other truly incredible speakers. If you haven’t registered, it’s not too late! Register today at www.healthadvocacysummit-virtual.org .

Love & Relationships for Young Adults Living With Chronic Illness: COVID-19 Edition

Many undergraduate and graduate students who are at higher risk of COVID-19 have concerns about their education during the ongoing global pandemic. The Health Advocacy Summit has launched a support network and compiled resources for students with disabilities, including chronic illness and rare diseases.

This Guide was created by The Health Advocacy Summit’s High-Risk Student Support Network. Please note that various colleges and universities may offer different accommodations, and it is best to check with your Disability Services office about which accommodations and resources your school offers. 

For questions, comments, or to suggest/request any other resources, please contact Amy at amy@healthadvocacysummit.org. 

Relationships and Dating

From when (and how much) to share about your disease or disability with your significant other to how casual dating fits into the chronic illness world, navigating the world of relationships can be a challenge. Nevertheless, always remember: we are human beings, and we deserve love and romance as much as anyone else!

Below are some resources shedding light on sex, relationships, love, and chronic illness/disability:

• Spooning with Spoonies: With a podcast released every other Tuesday, Noa Porten from Spooning with Spoonies and her guests share about anything and everything about chronic illness and dating - from self love and casual dating to first date fashion and humor.

  • Check out the profiles of the guests that Noa has interviewed as well!

• Disability After Dark: Shedding light on the lived experiences of disability, queerness, and sexuality, this podcast by Andrew Gurza explores intersectional topics relating to sex and disability. 

• Intimately: A company with a functional, fashionable, and adaptive lingerie line, Intimately recognizes the beauty in folks of all embodiments. Check out their online store and read their blog, featuring stories for and by women with disabilities.

• Squirmy and Grubs: This YouTube channel features videos by Shane and Hannah, a recently-married couple who navigates their lives together with humor and grace. Shane has a muscular disease and uses a wheelchair, and while Hannah does not, they both share their perspectives and experiences 

The Five Love Languages

The Five Love Languages are a way to express care not only to your loved ones (whether they are your roommates, friends, family, or significant other), but also to yourself! 

The way you show love is often also the way you like to receive love. Different people have varying ways that they tend to show & receive love. Check in with yourself - are you being supported in the way that you need & deserve? How can you show yourself the same love and value that you show to others and to your work? 

Below are the Five Love Languages as well as ways to practice showing both yourself and others love in these ways. Remember: no one size fits all! Take time to explore, identify, and communicate whichever way(s) work best for you. 

• Words of affirmation – Intentionally and meaningfully using spoken and written words to support, uplift, and empathize with yourself and/or your loved one

  • How to show yourself love in this way: positive self-talk; journaling; practicing daily affirmations; filling a jar with notes of things that you love about yourself

  • How to show others love in this way: checking in with someone via phone/text; sharing encouragement; verbalizing specific appreciation for something that you admire about the person

• Quality time – Giving yourself/your loved one undivided attention and participating in something that brings you (both) joy. 

  • How to show yourself love in this way: blocking out “you time” on your calendar to engage in something that you enjoy; engaging in daily mindfulness practices; treating yourself to a solo brunch/dinner date or takeout

  • How to show others love in this way: spending time together in a more personal, quiet setting; spending time “together but apart,” engaging in activities that you each enjoy separately, but in the same room; giving someone undivided attention when engaging in conversation (virtually or in person); playing a game or doing an activity that you both enjoy

• Receiving Gifts - A gift is any tangible item that reminds you that someone is thinking of you --the gift doesn’t have to cost money, and doesn’t have to take a lot of time to create; it simply shows thoughtfulness and reminds someone (or yourself) that they are cared for and loved. 

  • How to show yourself love in this way: treat yourself to a home-cooked meal, a new set of pens, or something that you love; invest in yourself and allow yourself to experience something that you’ve always wanted to - whether that’s taking a class or starting a new hobby

  • How to show others love in this way: making or sending someone their favorite food/snack; sending someone a card; mailing or gifting someone a trinket that reminds you of them

• Acts of Service – Expressing love or care for someone (or yourself) by doing something for them that you know they would appreciate or helping them to accomplish a task 

  • How to show yourself love in this way: scheduling regular physical and mental health check-ups, addressing any concerns as they arise; doing something to help “future you,” like ordering or picking up your medication in advance or sorting your laundry ahead of time; volunteering with an organization that aligns with your own passions/interests (this is an act of service to your love for that community as well!)

  • How to show others love in this way: taking the time to learn about someone’s disease or disability; planning something for you and your loved one(s); getting out of your comfort zone to do something that you know your loved one enjoys; practicing acts of random kindness

• Physical touch – Showing someone that you love and appreciate them (or yourself!) through human contact, including * consensual * holding hands, hugging, kissing, etc. 

  • How to show yourself love in this way: putting a hand over your heart and breathing deeply; stretching your body and muscles; creating a skincare routine that works for you; investing in a heating pad or weighted blanket

  • How to show others love in this way (note that during the COVID-19 pandemic, some of these activities should be modified or avoided, depending on who is within your “pandemic bubble,” for safety reasons): consensual hugs, massages, sitting side-by-side, holding hands

Think about which love language(s) most resonate with you, try out different ways of showing love to yourself and others, and finally, engage in open conversations with your loved ones about your respective love languages, so you can figure out how to best support each other!!

Accommodations 101: COVID-19 Edition

January Resources from our Student Support Network

Many undergraduate and graduate students who are at higher risk of COVID-19 have concerns about their education during the ongoing global pandemic. The Health Advocacy Summit has launched a support network and compiled resources for students with disabilities, including chronic illness and rare diseases.

This Guide was created by The Health Advocacy Summit’s High-Risk Student Support Network. Please note that various colleges and universities may offer different accommodations, and it is best to check with your Disability Services office about which accommodations and resources your school offers. 

For questions, comments, or to suggest/request any other resources, please contact Amy at amy@healthadvocacysummit.org. 

Know Your Rights

Under Section 504 of the Rehabilitation Act of 1973, The Americans With Disabilities Act of 1990, you have the right to equal access to higher education and reasonable accommodations in the classroom, online learning, tutoring, school programs, student-led organizations, and housing. In 2008, an amendment was added to broaden the interpretation of disability to cover those with 

• Chronic medical disabilities

• Mental health illnesses

• Chronic illnesses that are episodic or in remission

• Temporary disabilities, such as a broken leg or arm

Accommodations for disabilities such as chronic illness and rare disease can include (but are not limited to)...

• Priority enrollment: This would allow you to enroll in your classes at an earlier time, which could help you plan your academic schedule around your medication schedule and to find classes at a time that works best for your body.

• Extended time on exams and quizzes: This could allow you to “pause the clock” during an exam (for example, if you needed to use the bathroom during the exam) or to increase the time limit to finish the exam. Depending on your professor, you may be able to take the exam in your classroom or at your school’s Testing Center. In the event that you are experiencing symptoms and unable to take your exam on its scheduled day, you may be able to request to reschedule it to a later date.

  • During the COVID-19 pandemic and distance learning, this could also mean that you are able to stay on your virtual testing platform for an extended period of time.

• Extended/flexible deadlines on assignments: If you are experiencing symptoms, this can allow you to have a reasonable extension on class assignments (such as moving the due date). 

• Flexible attendance: For classes that have required attendance or participation, you may be allowed more flexibility in the number of lectures or discussions that you are allowed to miss, without this having a negative impact on your grade. If you are experiencing symptoms that prevent you from letting your professor know about you missing class ahead of time, this may also allow you the extra flexibility to 

  • During the COVID-19 pandemic and distance learning, this can include allowing students to turn off their camera during class or to participate via the chat box rather than verbally.

• Note-taking support and resources: Your school may offer student note-taking services in which you may be able to access class notes from a classmate. This is especially useful for instances in which you are unable to attend class or for classes that are not recorded.

• Housing accommodations: Depending on the types of housing that your school offers, you may be able to request a specific dorm or apartment-style. Some examples include a dorm set up with a private bathroom, a dorm with access to a kitchen, or an apartment with a single room. Note that housing accommodations often take longer to process, so it’s important to talk with your school’s Disability Support office as soon as possible.

• Dining accommodations: If you do live in university-owned housing, you may be able to qualify for a specific meal plan, access to a kitchen, or a separate food pantry (ex: for gluten-free food). Certain schools may also have an on-site dietitian or nutritionist that may be able to assist you with your specific needs.

• Mobility accommodations: Although this accommodation does vary based on school and your individual needs, some examples of this may include requesting for your class to be located in a building with elevators, on the ground floor, or a building with an accessible bathroom. Please note that these accommodations may look different during COVID-19.

• Transportation: Similar to mobility accommodations, these may vary. Some examples include your school offering a van/shuttle service to and from class and to be compensated for public transportation (for example, a school-issued bus pass).
  

For more information, check out these additional resources:

• 7 Things to Know About College Disability Services

• Types of College Accommodations and Services

• Online Learning Tips

• Online Learning Accessibility and Your Legal Rights

• Department of Education COVID-19 Resources for ALL Schools

• The Department of Education on Higher Education and COVID-19

• CDC Guidance on Higher Education

• Planning Steps for Patients and Families During the COVID-19 Crisis

The CCYAN officially introduces the 2021 fellows!

The Crohn’s and Colitis Young Adults Network (CCYAN) is an international fellowship program, through the Health Advocacy Summit, for young adults with inflammatory bowel diseases. The CCYAN is proud to introduce nine amazing fellows from five countries across the globe that are excited to represent & advocate for the young adult #IBD community!

How to Succeed in the Face of a Life-Altering Disease

First-hand advice on how to keep pushing through a chronic illness.

By Sneha Dave

My high-school experience was amazing and unforgettable. After living with ulcerative colitis for more than 12 years, the most valuable thing I learned is that absolutely anything is possible.

Some would say I am a success story, considering that after living most of my life with severe ulcerative colitis and resulting complications, I was able to graduate as a part of the top-20 of my class of 600. But these past four years in high school have been my choice to live like I didn't have ulcerative colitis. My "successes" and "failures" in high school have been driven by the idea that colitis would be a part of me, but I would not be a part of it.

My detailed story with ulcerative colitis can be found here.

Recently, I was selected as a Coca-Cola Scholar and an Eli Lilly Scholar, meaning my college experience is paid for. Behind this scholarship is an unforgettable journey of triumphs and defeats. I was told, when my major flare-up started in sixth grade, that each day would be new and that I would need to take it easier than my classmates. I didn't understand why at the time, but as my disease progressed, and as I started calling the hospital my home, it became apparent. Instead of letting my disease be a reason for me to get out of some assignments, I began to feel a sense of competitiveness with my disease – I would not let it slow me down. And so I didn't. Throughout high school, I would take tests the morning of a procedure that required me to remain on a liquid diet for 24 hours, and I would finish homework before I was called into procedures requiring anesthesia. "Why are you doing this to yourself?" my parents would ask, but it was a sort of need for me to prove that ulcerative colitis did not hold me captive. For me, graduating high school at the top of my class is not only an achievement, but also proof that ulcerative colitis did not keep me from my goals for so many years. Here is some advice I wish I had and what I have learned throughout high school.

Find your own way around, because you will have to be persistent to get opportunities.

When I came back from being severely ill, I faced a degree of unfair treatment my freshman year. I really wanted to become an advocate for individuals with chronic illnesses, specifically inflammatory bowel diseases, and to do that I thought I could go to my school as a starting point. When I kept getting denied due to my inability to be at school often, I knew that the only way for me to make a difference for individuals with chronic illnesses would be by myself. About three months after my colectomy surgery, as a freshman, I started the "Crohn's and Colitis Teen Times," now a nonprofit that serves individuals with chronic illnesses around the world. I sought out opportunities beyond my school, but what was unfortunate was that despite my explanation and my increasingly better resume, I was still not chosen for any opportunity without a fight. The point here is that oftentimes your chronic illness will seclude you from society, and it is up to you to build yourself and follow your passions.

Your illness cannot be your excuse.

In middle school, many of my teachers tried to make the workload a bit less strenuous due to my partial schooling and deteriorating health. In high school, however, everything started to count and I began my journey of working as hard as my peers. After all, I took the same Advanced Placement tests and standardized tests and had to get the same scores – even if I did not have the same amount of sleep or even if I was just a couple of weeks out from a major surgery. Most chronic illnesses are invisible, and with that it is more difficult to explain your condition and receive the same empathy as someone who is visibly sick.

Share your story.

I never spoke a word about my disease until my freshman year – my entire life my best friends were the only ones who knew I suffered from ulcerative colitis, but I only told them a fourth of what I actually went through. It is imperative to tell others what you are going through so that you are able to explain why you cannot participate in something or are turning in an assignment late – because you will undoubtedly receive those questions.

Stay resilient.

It is quite impossible to describe how many times my sickness tested my mental ability to keep pushing. I still remember when I returned home from my first major surgery: the removal of my entire large intestine. Coming home with an ileostomy bag, I experienced a huge physical adjustment, but almost a week after I returned I took finals that I had missed due to surgery. Looking back, I was crazy for taking those finals while recovering and on pain medications. Remain resilient, because those are times that will pass, but a slip-up in your performance will stay. With that being said, pay significant attention to your health.

Keep your health above your goals.

While it seems as though for much of my high school I didn't prioritize my health, I strongly suggest focusing on yourself before school. Some of the above advice may say the contrary, but truly pay attention to yourself before your tasks. The first step is fixing you, and I was lucky enough to have my parents constantly reminding me of this.

Stay passionate, focused and happy with what you have. Living with a chronic illness is difficult in a fast-paced society. Overcoming your obstacles with success just takes a little determination and grit to find yourself somewhere that was once unimaginable.

How to Live With Food Restrictions

Tips for avoiding off-limits foods your body can't tolerate. Even when your taste buds crave them.

By Sneha Dave

Going to the movies is excruciating – not a typical statement for a teenager to make. I can’t ever concentrate on the film, only the sights and sounds of others eating the favorite food I haven’t been able to consume in years: popcorn.

Restricting or cutting out certain foods can be extremely difficult for those of us whose bodies can’t tolerate them. Diagnosed with debilitating ulcerative colitis at age 6, I have learned to navigate a world of dietary minefields. But armed with these strategies, I have learned to combat cravings for things that could wreak havoc in my body.

If you or someone you know is struggling to avoid off-limits foods, here’s what works for me:

1. Find alternatives. After a grueling two weeks in the hospital, a nutritionist visited me at age 12 for a serious talk about my new dietary restrictions. Corn – in any shape or form – was out of the picture, as were many mouthwatering foods such as tacos, pizza and ice cream. The worst part? After reading nutrition labels, nearly everything on grocery store shelves seemed to have the very ingredients I couldn’t touch. So instead of eating those cheese puffs I loved (which had cornmeal) we searched around for a good replacement. Rice puffs, it turns out, taste very similar. It helps a lot to make small substitutions that still keep things “normal.”

2. Visit a health nutrition store. Not everything I used to eat can be replaced with a direct alternative. That’s why I’ve found it helpful to pick out foods I like that don’t cause issues and aren’t substitutions for something else. Many health food stores seem to cater to people like me who must avoid certain foods for health reasons, and tend to sell products with clearly labeled ingredients. It helps to be able to quickly rule out a food before falling in love with it.  

3. If you are going to a restaurant or a party, know your limits. I remember going to several parties and having to practically bite my tongue to avoid foods that looked so good but I knew would cause trouble. I still wanted to be social, and didn’t want to skip events just because of my limited diet. So instead, I found it helpful to eat before the events, which would lessen my cravings for foods my body would sorely regret. I did eat at the events, but picked things that were safe and in bite-size portions.  

4. Learn and understand your body. At times, I wanted so badly to stuff myself with all the popcorn and Mexican food my body could take. Even at a young age, I was forced to understand my body and learn the severe consequences certain foods could have on me. Food restrictions are a lifelong reality for me that change every so often. I know this and have suffered before from ignoring this reality. Today, at age 17, I know it’s important to trust yourself to make the right decisions no matter what situation you’re in, but to identify and avoid temptation triggers.

5. Know you’re not the only one. Being mentally strong is one of the toughest parts of living with food restrictions, especially for people with a long list of banned foods. But there are others out there who are facing the same challenges as you. Being able to connect and network with others is a huge step to being able to adapt successfully to a restricted diet.

6. See a professional. When my diet was at its most restrictive, it was difficult for me to even find online resources with useful guidance. Consulting with a dietitian or nutritionist who could help me plan meals for the week made all the difference, so that my parents and I didn’t have to spend all our time checking products for offending ingredients. The professional also made sure I was getting all the daily nutrients that I needed, which can be very tricky on a restrictive diet.

7. Stay away from dangerous foods. My family was extremely gracious in supporting me through all of my dietary adventures. They basically did the diet with me. This made it easy: “Red-alert” foods were not in my environment and thus cravings became significantly less. If your family or housemates are understandably unwilling to live without their favorite foods, then at least ask them to please keep them out of your sight.

Although food restrictions may be horrific to deal with, they certainly build psychological courage. Throughout my experience with many diets and food restrictions, I have found that with experience, conquering food cravings becomes easier. Over time, the foods that cause you trouble may change as well, so it’s worthwhile to revisit them periodically. You might once again be able to eat that beloved meal.