Last week Little Lobbyists joined Senator Van Hollen, Representatives Schkowsky, DeLauro and Doggett, Moms Rising and Lower Drug Prices Now for a press conference on Capitol Hill to demand that any vaccine or treatment developed for the novel coronavirus be affordable and accessible to ALL Americans. Little Lobbyists Yasmin Canales spoke on our behalf, her speech is below:

My name is Yasmin Canales and I am member of Little Lobbyists, an organization who advocates for kids with complex medical needs and disabilities. I am a high school senior, just accepted into my top 2 choices for college. I love swimming, work as a lifeguard, and am a youth group leader with a passion for sharing my faith. I was also born with a genetic disease called Cystic Fibrosis, which affects all my organs, but especially my respiratory and digestive systems. Since birth, I have had over 30 hospitalizations for weeks at a time as well as 15 surgeries. I take 21 different medications, including over 35 pills daily, and 2-4 hours of intense respiratory therapies. 

The medicines I need to stay alive cost over $23,000 for one month. Many of these drugs are so expensive because the companies that make them have a monopoly, allowing them to set prices as high as they want. It is extremely frustrating to know our public tax dollars fund much of the research for these medicines, but we can’t afford them because private pharmaceutical corporations are allowed to inflate prices to pad their profits. 

Regarding the outbreak of the novel coronavirus, COVID-19, the administration has said they won't promise a vaccine will be available or affordable for everyone, because pharmaceutical companies need to make money. But 27 million Americans are uninsured, 34 million working people have no paid sick days, and we are in contact with one another every day. Affordable, equal access to ALL for any treatment or vaccine for the novel coronavirus is of the utmost importance to me. My compromised immune system and my lowered lung function will not be able to fight off this novel virus, and I might die if access is denied to myself or those around me. When the virus spreads into my community, my life and the lives of people like myself and many other children with complex medical needs, is on the line.

The availability of a future vaccine or treatment for this global pandemic should not be in question. There is currently a provision in the Affordable Care Act mandating all federally recommended vaccines be provided at no cost. Public taxpayer funds have already gone into coronavirus research - we’ve already paid for it and we should be guaranteed affordable access. 

There are things more important than profits, like our health. I want to thank Senator Van Hollen and Representatives Schkowsky and Doggett for holding the Administration accountable by saying no monopoly for coronavirus drugs. The safety of every American, of every person we love, in the face of this global pandemic should be everyone's top priority - especially our government's.

I’m conservative on some things and less on others. A true swing voter, a moderate. A Republican was as likely to get my vote as a Democrat —dependent on their voting history on issues important to me. Historically, I leaned more Republican than Democrat until last year, when the Affordable Care Act (ACA) came under fire and I became terrified that my son might lose the health care vital to his survival.

My son Jack is 7 and has a fatal genetic disease called Cystic Fibrosis. This disease is scary, profoundly expensive (just one of the 14 medications he needs to survive is $1,200 per month), excluded from life insurance policies, and fatal.

When Jack was born the full protection for pre-existing conditions provided by the ACA wasn’t yet in place. When he contracted MRSA (a very scary infection), I used up all my vacation time and FMLA to care for him and faced losing a job I’d held for 10 years, knowing my son’s disease made him largely uninsurable. I was terrified that if I lost my job, I’d also lose my son.

Fortunately, I was lucky. The CEO of the huge company I worked for had a heart. He learned of my dilemma and allowed me to work from home. What a relief that was! For 3 months I worked from home, feeling more secure, but still terrified. I’d experienced exactly how quickly my son could go from having all he needs – to having nothing at all. It wasn’t until the full protection of the ACA took effect in January of 2014 that I felt safe. For the first time since Jack was born insurance companies couldn’t discriminate against him by withholding coverage.

Others weren’t as lucky as I was. Their CEO didn’t save their job, their child was born, and died, before the ACA. In the history of health insurance in this country those of us with pre-existing conditions have only experienced 4 years of guaranteed coverage, and we’re already standing on the edge of losing it.

I am a mom fighting for her son’s right to live his healthiest life.

I speak from experience. I’m not a person raging from behind the safety of a keyboard, I’m not a person whose feelings are hurt easily, and I don’t make assumptions. I do speak in person with my politicians at every opportunity, and I actively seek those opportunities out. I educate myself before making any political decision (or post).

No candidate who voted yes on the Tax Bill that weakened that ACA or in favor of short-term “junk” insurance will get my vote. I am a #HealthCareVoter, my son Jack is a #LittleLobbyists, and Jennifer Wexton will get my vote over Representative Barbara Comstock, because Comstock has proven to me that she won’t protect us and she failed my son with her votes.

Many Republicans I’ve spoken with have argued that the Tillis Bill is the GOP’s answer to protecting pre-existing conditions. This is a half truth, at best. While the bill does prevent insurance companies from excluding people with pre-existing conditions all together, it does NOT require insurers to provide coverage for their pre-existing condition – or prevent their premiums from being far more expensive.

I used to be a swing voter that leaned Republican. But, now that the Republican Party has reduced rare disease tax credits, is not protecting people with pre-existing conditions, and moved (in my opinion) far too quickly on a decision about a lifetime Supreme Court Justice who could determine the future of health care in this country... the GOP has single handedly forced me to move steadily and solidly to the left.

My family is a working, lower middle-class family, with a Federal health insurance plan. Between now and December we will work hard to pay all of our 2018 medical costs, because typically by February 1, 2019 we will owe $9,000 again.

We participate in grants and medication coupons to help us, but because of the new accumulators payors introduced this year (our insurance is one of them) which don’t count coupons and grants towards our deductible or out of pocket max, we’re likely going to owe even more next year. Meanwhile the insurance company will receive our deductible twice – once from our coupons and grants, then again from us directly.

This week I started selling our things on Facebook to help cover our medical bills, which is normal for many families dealing with expensive illnesses, but was somewhat shocking to many of my friends who reached out with offers of help and crowd-funding.

While the offers were sweet, we respectfully declined. Crowd-funding Jack’s medical needs is not sustainable. Unless health care in our country changes, these expenses will continue to build for the duration of Jack’s life. The single biggest thing you can do to truly help families like mine, is VOTE for candidates who will protect access to affordable health care for everyone who needs it.