I've spent three years knowing that young adult cancer patients have an unfair experience, because I've lived it. When I was sick, I tried desperately to understand how seeking treatment for cancer could be destroying the lives of so many young people by burdening them with both treatment and loan payments. One of my medicines, just to stop the nausea from chemo, was in the form of three pills that you take immediately before, during, and after a chemo infusion. Without insurance, the three small pills were $500. I couldn't believe just because I had insurance, I was able to take this medicine and vomit less, while people with other insurances would simply have to make do with debilitating, humiliating, and exhausting symptoms.
Now, one of my closest childhood friends has cancer too, and it seems like the government is doing everything it can to take away our most basic protections, like a right to insurance even with
preexisting conditions. I knew that I had to tell my story. But just knowing that wasn't going to be enough to get me through conversations with my representatives.
Even though over
70,000 young adults are diagnosed with cancer every year, H.R. 2976, or "Deferment For Active Cancer Treatment Act," is the first ever bill meant to protect young adults with cancer. Currently, young adults with cancer have over $100,000 less in net worth than their peers. Along with the emotional, physical, and psychosocial impact of the disease, the financial burden often becomes unbearable. But we still have no legislative protections (and with attacks on reproductive health and the ACA, it looks like it's only getting worse).
So when I found out that
Critical Mass: The Young Adult Cancer Alliance was supporting H.R. 2976, which proposes to pause student loan payments (and interest accruement) for cancer patients throughout treatment, during their first ever Action Day, it felt like the perfect opportunity to take my first steps as a political advocate. It also coincided within 10 days of my three-year survival anniversary.
I joined other young adult cancer survivors on Capitol Hill without knowing the first thing about
how to lobby for a bill. It was exhausting, but I got to spend a day telling politicians and their staff members about what being young and sick is really like. We're not just bald and tired; we're actively marginalized. And now we're fighting back.
As I spent a full day lobbying for fair treatment for people like myself, I also learned a lot about how advocacy actually works. Everything is more interconnected than you'd ever expect.Here are 14 things I learned lobbying on the Hill for the first time.
just means trying to influence the opinion of a public official. These days, it's often done by scheduling meetings with your local representatives, usually in organized groups. A day of lobbying typically involves a rotation of 10 to 30 minute meetings with representatives and staffers, focused on a specific issue.
When you go into a meeting, you need to have an "ask." "Your ask needs to be very clear: vote on bill X, write this bill, [or] write an amendment,"
Audrey Henson, Founder and CEO of College To Congress, tells Bustle. To ensure that I really knew what I was talking about when I asked for support for HR 2976, I made sure to comb the Critical Mass website in the weeks between registration and Action Day. No matter how personal your story, based on my own experience, you still need to really understand the legislation. So read up.
Schedule Your Meetings Closer Together (Geographically)
One of our biggest mistakes day-of was not taking geography into consideration when planning our meetings.
If you're considering "
storming the Hill" with a message, it's a good idea to speak to both Congressmen and Senators. But if you haven't spent much time on Capitol Hill, you may not realize that the House and Senate office buildings are on opposite sides of the Capitol. The walk can take up to twenty minutes, and D.C. weather is volatile at best, so map it out before you make any concrete plans.
From my experience, it's best to do House meetings in chunks, and Senate meetings in chunks. Even if your proposed legislation is on only one side of Congress, it's always important to cover your bases. You don't know the future of your bill, and even if it's about to go through, it's important to share with your representatives what their constituents care about. So check out the walking distances (and the weather) on your computer beforehand, and make sure you're not making things unnecessarily difficult for yourself.
Whether it's just etiquette or a genuinely effective lobbying strategy, I learned that you absolutely should come in with a one-pager on your issue. A one-pager is a visually interesting sheet of paper with a basic explanation of your "ask." Ours had statistics about young adult cancer, as well as an easy-to-read explainer on H.R. 2976.
Staffers and their representatives do not have time to read anything more than this about the proposed (or opposed) legislation, so don't give them more than that. In truth, they might not even read your handout, but it's a good way to catch the eye of other staff members if it's visually effective. Plus, throughout the day, you can check back in on your one-pager to remember what your most important talking points are.
Hashtags work. Especially on days like these. Whether you're with a large or small group, start tweeting out about your issue a few weeks before you hit the Hill.
Day-of, you can use the hashtag to write updates and connect with people. In my experience, the
#YACAD18 hashtag was a really effective way to reach out to the young adult cancer community and the cancer community as a whole. Our tweets, a week later, are still getting likes, comments, and retweets. And if you can get enough support, your hashtag might even trend locally.
From my experience, it's really important to dress right for the occasion. Seriously — how often are you going to have the chance to sit face-to-face with lawmakers?
Err on the side of dressing too formally (like you would at any
job interview), but make sure to wear layers. You need to be ready for different office buildings with different temperature settings, and the strange weather of our nation's capital. It's also really important, I learned, to wear shoes you can walk in. Stilettos are great for some occasions, but strappy sandals and oxfords are just fine for this.
Check Your Other Politics At The Door
You're there to tackle one specific issue, so put your blinders on, just for now.
"Keep your personal political views out of the meeting," Melanie Fonder Kaye, communications strategist for Critical Mass, tells Bustle. "You're there to share your unique perspective." So even though the C-SPAN live stream of the farm bill and immigration vote was playing in the background, my team made sure to focus on our task: to get people to learn about, and consider, HR 2976.
As a first-timer, it was unsettling to have to put the pause button on my horror at what's going on at the border. But I pictured myself, three years ago, my friend currently in treatment, and everyone I know who's been hurt by this disease, and I focused on the task at hand. I also promised myself I'd work harder to stand up for immigration justice once I'd left the Hill that day.
"People who work on the Hill came here because they are passionate about their communities and our country," Henson says. Don't forget that they care.
Know The Worth Of Staff Assistants
I learned that it doesn't matter whether you meet your representative or not. Their staffers are just as good to sit down and talk to. "The most important 'do' is to treat the staff well. They are young people at the beginning of their career. For many, an advocate could be the first person to ask them to think about [your issue]," Kate Houghton, the CEO of
Critical Mass, tells Bustle. And if you impress a staffer, you've got a line of communication straight to the top.
Plus, getting face-to-face with
anyone is going to be a major plus. "You’ve got to show up," Houghton says. "All the ways you reach lawmakers are important —so keep emailing, tweeting, and marching — but to really make a difference, you have to sit across from a Member of Congress or their staff and put a face on the issues you are raising." Once you get that one meeting where someone is ready to fight for your cause with you, you'll understand.
Know What You're Going To Say, And When
At our Day Of Action, the trainers were very clear to tell us that there's a specific rhythm to meetings on the Hill. While training isn't necessary, it's important to know that your meetings will be short, and that you need to ask for what you want, tell your personal story, ask again, and then say thanks.
And when my team of Massachusetts delegates got together, we developed our own style. Our leader started and ended the conversation and made the first ask, and the rest of us told our personal stories in a way that connected to the legislation.
"Practice and know your elevator pitch (it should be short!)," Fonder Kaye says. "Even though some meetings might be scheduled for a half hour, they will rarely ever last that long. In fact, you should be ready to get to your 'ask' in the first five minutes of the meeting!" You don't need to have anything memorized, just share how you're personally affected. And if you stumble, make sure you have a plan for someone else in the room to help get you back on track.
Be Ready To Go With The Flow
Things change in an instant on the Hill. According to my experience, that means you have to be ready to meet with someone at the drop of a hat, and to constantly be in email communication with staffers to make sure your meetings, and their schedules, are on track.
"Be prepared for schedules to change, staffers and members are busy and the schedule is constantly changing," Fonder Kaye says. "Be nimble and know that it's not about you!" So, for example, when my team got a meeting with
Elizabeth Warren's office, we fit it in, and adjusted our day around it. It was worth it.
Don't Expect Everyone To Be Receptive
Even the most common sense legislation, like HR 2976, can hit its roadblocks. Even though my team knew that asking for support on a bill that simply pauses student loan bills for a year during cancer treatment wasn't anything too polarizing, we also went in knowing that some people wouldn't quite get it.
As one of my team members said, cancer and finances are two really difficult topics to talk about. They make people uncomfortable. One person we met with could barely maintain eye contact when we told our stories of survival. But you have to keep telling your story, and hoping people will listen. "As
Representative McGovern said when he spoke at the [Critical Mass] Action Day, we are our elected representatives’ teachers," Houghton says. "They enact laws but rely on advocates to let them know if those laws are supporting cancer care." No matter what issue you're arguing for, you're the teacher in the room. Even if the staffer is having a hard day or seems unreceptive, they might be really taking it in. And it could lead to change.
I didn't know this before going in, but my experience showed that staffers and representatives are happy to pose for pictures after their meetings, and even happier when you tweet them out. So don't be shy, even if you haven't gotten a concrete "yes" from the office, to
get a picture at the very least. You can then spread your message with a wider audience this way; and having a visual is a much more effective tool of online advocacy than words alone.
An added bonus is that, if you include the representative's handle, they might actually see the faces of your team when they open up Twitter, and be a little bit more connected to your cause than if they'd just heard the major points and seen your one-pager.
Make Time For Self-Care
Aaron P. Bernstein/Getty Images News/Getty Images
Not every legislative issue is going to be as personally-charged as young adult cancer legislation was to me, but arguing for something you're passionate about all day can be incredibly tiring.
I hadn't spoken about cancer that much in one day since I actually had cancer, and sharing with legislators in 10-minute chunks the most difficult parts of the experience was challenging. Luckily, my team was able to schedule in two 30-minute breaks. I was able to get caffeine, get some good nutritious food (there's a Pret A Manger not far from the Capitol), and really sit and breathe. No matter how seasoned a lobbyist you are, you deserve to take the time in your day to care for yourself and prevent burnout.
This tip is perhaps the most important one for new lobbyists, and people who are less likely to be able to travel to Capitol Hill. Being face-to-face with your representatives is the best bet; writing is the second best.
"[If you've just had meetings,] be gracious, and follow up with an email (attaching any one-pagers or relevant
short materials) and ideally, with a handwritten note or postcard within a week," Fonder Kaye says. If you aren't going to the Hill, try sending out a round of post cards to your representatives, instead of emails, for a week. Mailing them will guarantee that a person sees your message, and holds it in their hands. Plus, fewer people are snail-mailing their congresspeople these days.
Our Day Of Action was on the one-year anniversary of when HR 2976 was introduced to the house. That's a testament to how slowly these things often move.
"The main 'don’t' is to expect your issue to be dealt with immediately," Houghton says. "On our Action Day, Congress was intensely debating immigration reform and dealing with public outcries against families separation. In that moment, immigration was front and center requiring action by Congress. But that doesn’t mean Congress can’t walk and chew gum at the same time." So continue to follow up with people you met with, and maybe even go back to meet them in person again. Your day of meetings is just the beginning.
I am aware that I am one of the lucky ones to have been able to sit on my representatives' couches and talk about my passion for this bill. Many young adults with cancer are too sick, too traumatized, or too financially constrained to be able to do so.
Lobbying is a great bucket-list thing to do, but it's also a bit addicting once you've started. And if you've been considering it, but anxious and unsure where to start, hopefully what I learned can help you out a bit. Maybe I'll see you there someday.