On World IBD Day, These 4 Advocacy Projects Will Directly Affect People with Crohn’s and UC

Initiatives will improve access to medications, nutrition, and bathrooms, plus raise awareness that IBD is not always a young person’s disease. Here’s how you can help.

May 19 is World IBD Day, a day when many people are keen to share their experiences of life with inflammatory bowel disease, whether that’s ulcerative colitis (UC) or Crohn’s disease. By doing so, we can raise awareness of these diseases, and help people understand the challenges we face.

While we don’t necessarily always have the spoons to advocate for our condition year-round, World IBD Day offers a focused opportunity for individuals and organizations alike to shine a spotlight on important key initiatives that can help improve the lives of the 70,000 Americans who are diagnosed with IBD each year.

Let’s take a look at four of the most important current advocacy initiatives that will directly affect those of us with Crohn’s disease or UC, and explore how you can get involved with them.

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1. Reform step therapy

We all want access to the medications that give us the best chance of living healthy, happy lives but this doesn’t always happen. The reason? Step therapy. It’s common practice for health insurers to require patients to try cheaper, insurer-preferred meds before they’ll approve your access to more expensive medications, even if your doctor recommends them and believes they’d be more effective.

In a 2016 survey by the Crohn’s & Colitis Foundation, 40% of respondents said they experienced step therapy, and of those, 59% had to wait over 3 months to start their optimal treatment plan, and 32% were delayed more than 7 months. This waiting can prolong painful or uncomfortable symptoms of the disease, or even lead to complications that come from uncontrolled IBD.

In Washington this year, a bill called the Safe Step Act of 2023 was introduced in both houses of Congress.

This crucial legislation, if passed, will make a real difference to people living with IBD. It would require group insurance plans to allow exceptions to step-therapy protocols and speed up access to the medication their doctor recommends, under certain conditions. These include situations that when delaying the recommended treatment would:

• lead to irreversible consequences
• cause adverse reactions
• prevent the person from performing their job or activities of daily living

It won’t end step therapy altogether but it does add common-sense changes to the protocol. I recommend identifying and reaching out to your elected representatives, and letting them know what a difference this bill will make for those of us with IBD and other chronic conditions.

2. Improve representation and treatment for older people with IBD

How often have you been told you look too young to be sick? Ironically, some people make the reverse assumption about IBD — that it doesn’t happen to older people. It’s true that IBD diagnosis does peak in young adults — it’s most often diagnosed in people ages 20–30 — but 10–15% are over 60 when they’re first diagnosed, with this number expected to rise.

The European Federation of Crohn’s and Ulcerative Colitis Associations will promote its “IBD Has No Age” campaign as it observes this World IBD Day. To begin, the EFCCA is launching a survey of people over 60 who live with IBD, to understand the level of support they receive and to ensure this age group is properly represented in studies, clinical practices, and more.

If you’re in this age group and interested in helping, please consider taking the survey, expected to be released on May 19.

You can raise awareness of this issue on social media, too. Use the hashtag #ibdhasnoage to spread the word that anyone, at any age can be diagnosed with IBD. You can also download a banner for your Facebook cover photo.

3. Ensure coverage for medical nutrition

Proper dietary advice and support are critical for people with IBD. One treatment option that’s not always explored is enteral nutrition, which involves consuming nutritionally complete formulas, either by mouth or via a feeding tube. This can be an effective treatment for IBD — however, only 4% of American gastroenterologists use enteral nutrition for their IBD patients.

One of the biggest reasons it’s not often used is because it’s not always covered by insurance, and can be very expensive if paid for out of pocket. The Crohn’s & Colitis Foundation is advocating for the Medical Nutrition Equity Act, which would ensure that private and federal insurers cover medically necessary foods like this.

How can you get involved? First, if you feel enteral nutrition could be beneficial for you, talk with your doctors about it. Show them the research around enteral nutrition and the work the Crohn’s & Colitis Foundation is doing.

Second, if enteral nutrition has helped you, use social media to share your experiences with it and expand awareness about this treatment option for IBD. Finally, consider contacting your elected representatives for their support in passing this important bill.

4. Improve access to bathrooms

How often have you been out in public and had to dash to the nearest restroom, mid-flare? If you were lucky, you were able to use the first one you tried. But that’s not always the case. Despite the Crohn’s & Colitis Foundation’s work leading state-level campaigns on this issue for nearly 2 decades, some businesses still deny access to their restrooms in these situations, which can lead to accidents, pain, and embarrassment.

There is some progress. Ally’s Law (officially called the Restroom Access Act) has been passed in 18 states, enabling any person who shows proof of their condition (such as the Crohn’s and Colitis Foundation’s “Can’t Wait Card” to be allowed to use a business’s restroom

However, not all businesses are aware of or compliant with the law, and 32 states still haven’t passed this law at all.

If you live in a state without Ally’s Law protections, let your legislators know how important it is — and why. After you do that, you can help others by downloading the foundation’s app, the We Can’t Wait: Restroom Finder. Not only is this crowdsourced app super useful, but you can help others with IBD by adding locations you know of near you that have publicly available restrooms.

You can also speak with local businesses or post on neighborhood social media pages to explain how necessary it is to allow restroom access. Local businesses can add their own names to the Restroom Finder app, or could even display a sign in their front window to let people walking by know they have an accessible restroom facility.

The takeaway

You don’t have to be an elected official or an influencer to get involved this World IBD Day. Ordinary people can be advocates, and help shape the conversations and realities of living with Crohn’s or ulcerative colitis.