In 2020, our world was met with a pandemic that would shake the core of civilization and more specifically, our country. Uncertainty and concern became the only sure thing we could depend on, and Americans of all ages became accustomed to loss.
Loss of face-to-face interactions, daily routines, family members or friends, jobs, health insurance coverage, in-person medical care, and life-altering medications became, unfortunately, more normal. We were stripped of what was familiar and quickly became vulnerable to unknown and unfortunate events.
For the rare and chronic disease communities that PSI assists daily, they’ve always lived in a world of uncertainty, faced unfortunate events, and experienced loss. The rest of the world joined them in 2020.
An alarming 29% of Americans lost their health insurance in 2020 and more than half remain uncovered due to cost barriers in 2021. Why? The report notes that the pandemic led to many hard-working Americans being laid off or furloughed resulting in the loss of group coverage.
Out of those who still don’t have coverage this year, the issue is they don’t have enough money to afford their premiums or deductibles, or they have other expenses such as rent or mortgage, groceries, utilities, etc. It’s estimated that one in 10 lost coverage due to job loss and remain uninsured.
Without insurance in 2021, how will these Americans, many living with one or more chronic illnesses, afford life-extending or saving medications?
Who Lost Health Insurance?
Special Enrollment Period
With many Americans losing health insurance, fortunately, you can now enroll in Marketplace health insurance until August 15, 2021. This is extended from the original special enrollment period that originally ended on May 15, 2021.
You also qualify for special enrollment at any time if you undergo a life event, such as losing other coverage, getting married, etc.
If you are on a State-based Marketplace health insurance plan, you will need to check with your state’s website for more information on special enrollment periods. You can also visit our Marketplace Map to view health insurance by state.
The American Rescue Plan
The extended special enrollment period is a part of the American Rescue Plan, a law created by the Biden-Harris administration that aims to reduce health care costs, expand insurance coverage, and address health care disparities.
The plan reduces health care costs for nine million people: “(The American Rescue plans ensures)…consumers eligible for premium tax credits have at least a couple plans to choose from that won’t cost more than 8.5% of their household income on their Marketplace plan premium per year.”
It will also allow 14.9 million Americans who don’t have health insurance to save money on premiums to find appropriate coverage, as well as address racial health inequities by reducing costs and expanding coverage.
COVID-19 and the Rare Disease Community
While the pandemic didn’t shine a light on the issue of access and affordability for the first time (it’s existed for as long as we’ve had healthcare), it did create awareness like never before. It allowed the average person to walk in the shoes of someone living with a chronic or rare disease, who is all too familiar with the struggle of maintaining their health, losing their job, and losing insurance, and the challenges they each present in paying for necessities, such as rent or medicine.
A woman living with Multiple Sclerosis recently shared her perspective on affordability within the 2021 Medication Access Report.
“I don’t know how people can afford to be sick and still live their lives. I take it one day at a time and hope I’m not going to find out when it’s too late that I really should have been on medication.”
Americans shouldn’t have to wait around to see what will happen if they can’t afford and access treatment for their illness. That’s where PSI comes in. That’s where our passion for helping others live their best lives presents.
With PSI’s support, eligible persons with rare or chronic diseases can rely on PSI to locate insurance coverage options, provide legal aid (for SSI and SSDI), and cover the cost of treatments and medications instead of the patient choosing one or more of the following unsustainable options.
· Go without treatment or medications to pay for basic bills (1 in 3 patients).
· Sacrifice basic needs and bills to afford medication (43% of patients).
· Stretch out their prescription by taking less, skipping doses, etc. (40% of patients).
· Put off a doctor’s visit or decline a medical test (1 in 4 Americans).
· Postpone bill payment (137 million Americans face medical financial hardship).
If the above challenges aren’t enough to convince our nation that our health system is broken, consider the fact that insurance companies are denying payments that are made on behalf of rare disease patients by non-profit charities and places of worship.
In 2014, the Centers for Medicare and Medicaid Services (CMS) created a rule that allows health insurance companies to prohibit premium and cost-sharing assistance from a non-profit organization or place of worship. When did humans stop caring for others and why has it continued throughout the pandemic?
At PSI, we’re choosing to make a difference and are standing up for our fellow humans. PSI’s CEO Gwen Cooper recently (in March of 2021) addressed lawmakers in Kentucky (pictured above) noting that it shouldn’t matter who pays for your health insurance, as long as the bill is paid and patient needs are met. She was the voice for the voiceless, and because of PSI’s efforts, Kentucky Senate Bill 44 has been signed into law by Governor Andy Beshear.
As PSI works tirelessly to improve our health system, we will look to others who share our passion for helping those living with rare and chronic diseases to support our efforts through grants, legislative initiatives, educational opportunities, and more.