Want More Psoriatic Disease Research? Here's How You, Too, Can Advocate to Congress on Capitol Hill

by Sabrina Skiles Patient Advocate

Meeting with my elected representatives in Congress to advocate for greater federal attention to psoriatic disease research was an incredibly surreal experience and I'm so glad I got the chance to have my voice be heard. Here are my top 10 tips for anyone else living with psoriasis who would like to share their story and advocate on behalf of all of us who live with psoriatic disease.

I’m Ready to Become an Advocate. But Where Do I Begin?

That’s easy: Go to the Take Action page on the National Psoriasis Foundation’s website to learn about state and federal issues that affect your care; to see the NPF’s policy platform and “access to care” statements; and learn how you can join your local Advocacy Day or attend an Advocacy Summit.

What Should I Do to Prepare to Meet My Representatives?

Find your lawmakers online. Review their websites to learn what they stand for, what they’ve accomplished, and what they want to achieve. This will give you helpful insight into what they want to hear about when you meet with them. Also, don’t be afraid to reach out to them on their social media channels. Even though it might not be them personally, someone in their camp is responsible for reading the tweets and responding to direct messages and Facebook posts. You never know where you’ll make an impact.

Sabrina Skiles at the House of Representatives.
Courtesy of Sabrina Skiles

How Can I Craft My Talking Points?

Tell your story. I was concerned with memorizing the jargon of the laws that the representatives stood for. But after speaking with other advocates, I realized I was focused on the wrong thing. These Congressional leaders know the law and the jargon. What they don’t know is how it affects you, their constituent. Tell them how psoriasis affects your life, your medical bills, your work life. Your personal health story is the best tool to influence change.

Make the Most of Your Time Together

It’s important to understand that you will only have about 15-20 minutes with your senator or representative. So keep your introduction brief, be positive, avoid bipartisanship, and make sure to ask the congressional leader to take action. That can be from co-sponsoring a bill or voting in favor of a particular bill. Once you’ve made your point, move on to the next ask. Think short, sweet, and concise.

Sabrina Skiles advocating for psoriasis.
Courtesy of Sabrina Skiles

Don’t Underestimate the Influence of Their Staff

These professionals work extremely closely with their lawmakers and may actually have more pull than you think. You may find common ground and your story or anecdote will be what the staff member mentions to their representative. True story: a family member of my Congressperson’s staff had psoriasis and we talked about that the remainder of the time. I’d like to think that made all the difference in the world.

Man giving out his business card.

Should I Bring Business Cards?

Absolutely. Think of the Rule of 7 in marketing: a prospect (the representative) needs to 'hear' the message at least seven times before they’ll take action. Here’s how that could work in the weeks before you head to Capitol Hill, while there, and after you’ve made it safely home.

Man putting a letter in an envelope.

The Rule of 7, Continued

If you want better access to healthcare, connect with your representative on Twitter first by simply retweeting one of their tweets (1 time); next, write a letter to your representative (2 times); get involved in a local advocacy day (3 times); let your representative know what you’re doing online (4 times); advocate in person on Capitol Hill (5 times); hand out your business cards to the representative or staff (6 times); follow up with a thank you email, letter, and/or message online (7 times). Now you’ve made your impression!

Open suitcase on a bed with toiletries in bag

How Should I Prepare to Preserve My Health While Visiting?

Your health should always be priority No. 1, especially while traveling. If you’re traveling with medication that needs to be refrigerated, call the hotel ahead of time and make sure your room has one. If it does not, ask: the hotel will be more than happy to accommodate you. Next, there will be a lot of walking when you get to Capitol Hill. If you have psoriasis patches on your feet or have psoriatic arthritis, wear comfortable walking shoes. Lastly, keep a travel size bottle of lotion with you at all times so you can keep your psoriasis flare-ups moisturized and hydrated

How Can I Make the Most of My Time While I Am With the Greater Psoriasis Community?

Talk and listen to each other. What others have done in their states to bring more awareness to psoriasis might inspire what you can do locally. Personal stories can change everything. For example, say you’re meeting with a lawmaker who mentions a state he used to represent. From talking to others in the psoriasis community, you know someone who lives there and lacks adequate access to health care. Here's your chance to speak up for someone who isn’t able to be there. Remember, personal stories are the best tool to influence change.

Share Your Adventure on Facebook, Twitter, Instagram, and Elsewhere

Be sure to share everything that you can on social media. Be conscious when you are meeting with lawmakers as some have a strict no-photo policy, while others will happily oblige. Just ask! And then share away on social media, tagging them, their team, and office. Also remember that a tweet, post or share with a photo gets 2.3 times more engagement than those without images.

Woman on the phone.

Follow Up With Everyone

Make sure to follow up with your representatives and each person you came into contact with. Remember the Rule of 7. Ask for their business cards and the best time to follow up. Ask if they prefer email or phone. Your follow up could just seal the deal. And most importantly, if you asked them to cosponsor a bill or they’ve already agreed to vote in favor of a bill, thank them for their efforts.

Sabrina Skiles
Meet Our Writer
Sabrina Skiles

Sabrina Skiles is a lifestyle and psoriasis blogger, who was also diagnosed with breast cancer just two days after her 35th birthday. She created her blog, Homegrown Houston as a lifestyle resource for millennial women and those living with chronic conditions. She shares daily inspiration from health and wellness, motherhood and marriage to managing a chronic disease while living a stylish life. Sabrina is also a volunteer mentor, coach and social ambassador for the National Psoriasis Foundation. You can find her sharing #chemolife and psoriasis tips while living a stylish life on Instagram @sabrinaskiles.