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.

My five-year-old daughter Louisa wakes up eager to attend preschool every day. She loves singing and dancing, and enjoys playing with Play Doh, as well as listening to endless bedtime story books. Louisa was also born with a rare and severe heart condition – Hypoplastic Left Heart Syndrome (HLHS), in which the left side of the heart is critically underdeveloped and does not supply the body with enough oxygenated blood. HLHS was a devastating diagnosis, but thanks to improved outcomes due to progress in science and surgery, our dedicated medical team, and access to quality health insurance, we have hope.

Louisa recently started taking a medication to lower her elevated lung pressures, a generic drug called Sildenafil, best known by its brand name Viagra. Yes, Viagra, the erectile dysfunction drug currently on the market in an over-the-counter pill form for $20 per month. Sildenafil has become a standard of care for babies and children with pulmonary hypertension and vascular resistance. One physician told me recently that 40% of their patients with Louisa’s heart condition are benefiting from this medication.

Small children and babies cannot take Sildenafil in pill form; it must be titrated in small oral suspension doses, available only by prescription, often in dosages too exact to cut and crush pills at home. However, the out-of-pocket cost of Sildenafil oral suspension is 300-600 times more than the out-of-pocket cost of the pill. Our family recently faced a crisis when we dealt with a delay in approval. Our nonprofit hospital pharmacy quoted us a cash price of $12,000 per month, out-of-pocket.

Fortunately, our insurer’s nurse case manager and Louisa’s cardiology staff were able to expedite approval. However, the insurance-covered rate was a steep $6,227.42 per month. While things worked out for our family, it is deeply concerning to know our child is dependent on a medication we cannot begin to afford without quality insurance. Other families have not been as lucky – one family in our situation faced a six-week delay in getting this medicine approved, although their child’s heart health is declining. Another had to pay $6,000 for one month, out of pocket, in order to avoid delaying necessary treatment.

This past June, when the FDA approved Novitium Pharma’s generic oral suspension of Sildenafil, Novitium’s CEO Chad Gassert said via press release: “We are pleased to announce that the launch of Sildenafil for oral suspension has already initiated. Novitium remains dedicated to providing patients with a steady supply of affordable treatment options, and to progressing the availability of generics in niche therapeutic categories.”

How can a family afford to pay $6,000 to $12,000 per month to keep their baby with a heart condition alive? Louisa takes nine additional medications – why should this one generic medication cost so much? Why do men with erectile dysfunction get a bargain basement price for the same generic medication? The reason is simple. There are currently no regulations on the cost of medicine in our country, so for-profit pharmaceutical companies charge whatever they think they can get for medication. And it’s not just my daughter’s medication – common medicines which have been on the market for decades, like epipens and insulin, cost thousands. Pharmaceutical companies know families like mine will do whatever it takes to keep our loved ones alive. All of us pay for the inflated costs of medications; these are being passed right back to all of us in the form of higher premiums and copays..

This fall, the House of Representatives has been holding hearings on H.R. 3, The Elijah E. Cummings Lower Drug Costs Now Act of 2019, introduced in June 2019. H.R. 3 requires the Center for Medicare & Medicaid Services (CMS) to negotiate with pharma companies for certain extremely expensive prescription drugs – current law does not allow CMS to do so. The Congressional Budget Office (CBO) estimates that Medicare Part D patients would save up to 55% on prescription drugs in the first round of negotiations, and 40 to 50% in subsequent rounds. The negotiated price would be based on 120% of the average cost of the drug in other industrialized countries, or 85% of the average U.S. manufacturer price.

The Lower Drug Costs Now Act would also lower the price of prescription drugs under private insurance plans, provided the insurer offers the negotiated CMS rates.

It’s vital that we reduce the cost of prescription drugs in the U.S. – the lives of uncountable numbers of infants, children, and adults depend on it. The Lower Drug Costs Now Act (H.R. 3) will be brought to a vote this week in the House of Representatives: Please contact your representative now and urge them to vote yes on H.R. 3.

Louisa helping her family with yard work.

My name is Tasha Nelson and I want to talk to you about my amazing son Jack.

Jack is a spirited, funny and imaginative 8 year old. He has a passion for Marshmello, video games, extreme weather and the Titanic. He sings in our local children's choir, is on our neighborhood swim team, and enjoys being  a cub scout. He is a little boy who loves music and science. If you ask him what he wants to be when he grows up, hell tell you “a DJ like Marhsmello that is also a doctor who cures cancer”. 

My little DJ-Doctor Jack was born and lives with a disease called Cystic Fibrosis. While this is thought of primarily as a lung disease, the truth is it affects nearly every major organ and system of his body. At one month old, Jack received this diagnosis and the first of what would become one of many daily life saving medications. This medication allowed him to digest food, something he had failed to do every day since he was born. The price tag on that medication? I was responsible for $240 per month.

 At 3 months old, Jack required another medication vital to his life. His mucous had become so thick in his sinuses that it was the consistency of chewing gum, and he struggled to breathe. His doctor prescribed a new daily medication that would help him breathe. 

My baby was struggling to breathe, and we had a solution available but the doctor told me that we would need a prior authorization from our insurance in order to fill the prescription. I called my insurance to ask how long this would take and was told 7-10 days if approved. IF approved. My baby needed to breathe and I was being told it may or not be approved for 7-10 days. AND the price tag on that medication?  I was responsible for $1,200 per month. 

As Jack ages, his disease requires him to take more and more medicine. New innovations in research and development are resulting in some extraordinary medications that have an even more extraordinary price tag. The median cost of medications for a person living with Cystic Fibrosis in the United States is nearly half a million dollars a year. Depending on your insurance plan, the cost to your family can vary anywhere from several hundred dollars per month to thousands. This is for life-saving medication, and I don’t think my son’s life should have a price tag. 

Every single day families like mine sell our things online or in yard sales, or start go-fund-me campaigns in an attempt to afford the medications our babies need. We do everything we can to avoid medical bankruptcy. We do everything we can to get the medication that keeps our kids alive.

What do we need to fix this broken system and change it to promote the well being of our chronically ill, rare disease, and disabled populations? We need formularies to no longer exist. We need prior authorizations to no longer exist.  We need innovation, research and development of new medications to continue, but the cost cannot be bankrupting families that are doing everything they can to keep their babies alive. A medication is only life-saving in use if it is accessible to the patient. If I can’t afford it, Jack can’t benefit from it. 

Children like Jack need their government to stand up to pharmaceutical manufacturers, pharmacy benefit managers, and insurance companies and say NO MORE. NO MORE will pharmaceutical companies continue to prioritize bloated corporate profits over patient lives. My son Jack, and all of the children like him, deserve better.

[image description: Little Lobbyists mom and director of operations, Tasha Nelson, speaking at the podium of a press conference for affordable pharmaceuticals.]

These remarks were given on September 25, 2019 at a press conference on Affordable Pharmaceuticals with Speaker Nancy Pelosi.