D.B. Wright, former head of a nonprofit religious organization in Washington, D.C., was well taken care of by his leadership board. He enjoyed an employment package that included full health care among other benefits.
“Being gainfully employed and having one of the best health insurances, I never thought about what medicines cost,” he said in a recent interview. But then crisis hit. Following a divorce, he moved back to his hometown of Albany, Ga., where he took a job with no benefits, which he eventually lost due to severe illnesses over the past five years. That’s when reality set in.
“I had to borrow money from my family and friends in order to get the medication that I needed to treat various issues.” Those issues included surgery to remove a baseball size tumor on his liver, a gall bladder removal and ultimately chronic pancreatitis.
In excruciating pain, Wright was prescribed a medicine called Creon to help with his digestion and relieve the pain. It worked wonders in the hospital. But upon discharge, he learned that Creon would cost him $850 a month, well beyond his income of zero except what he could borrow from friends and family. Even with a coupon or pharmacy discount, he said, the price “was still beyond my financial ability.”
Also dealing with high blood pressure and suffering through a spinal disorder that rendered him temporarily unable to walk, Wright has resolved what he believed to be the bottom line in America when it comes to prescription drugs. The doctors and pharmacists may be sympathetic, but the medication simply “costs what it costs,” he said. “It was a horrendous experience. And it’s so interesting that you need these medications to survive. It was horrible to go through. You kind of feel like if you don’t have the money, you don’t matter.”
The experience of D.B. Wright, who asked to only use his initials to protect his privacy, is among the reasons that civil rights leaders and lawmakers across the nation are now pressing increasingly hard to establish public policies to monitor and help make prescription drug prices affordable. Best known for their efforts to address police misconduct, voting rights protections, racial inequality, and economic injustices, civil rights organizations are now escalating their focus on issues in the area of health care – particularly the high cost of prescription drugs.
“While there has been much partisan back and forth on these issues in Washington, there has not been enough conversation about reining in the profits and excesses of health insurance companies, which refuse to cover critical procedures, medicines and services in order to preserve their billions of dollars in profits,” said the Rev. Al Sharpton in an Oct. 30, 2020, letter to Congressional Black Caucus Chairwoman Karen Bass (D-Calif.). “Let us make 2021 the year of Black health equity.”
Sharpton’s letter is part of a growing focus on racial disparities and inequities in health care, partially ignited by findings that people living in predominately Black counties are nearly “three times more likely to die of the COVID-19 than predominately white counties,” he said in his letter. The letter culminates more than a year of efforts by his National Action Network (NAN) and other civil rights and health organizations to deal with the suffering of people who must sometimes risk their lives by choosing to take care of other crucial bills instead of paying for prescription drugs.
Similarly focused, the NAACP national board of directors last year passed a resolution calling for Prescription Drug Affordability Boards (PDAB) in every state, which would “act as a watchdog for the public. It will carefully review drug costs and establish fair and affordable costs for state and local government.”
The resolution continues, the “NAACP supports the creation of a Prescription Drug Affordability Board in each state to determine how best to make prescription drugs more affordable for their residents, including by examining the entire drug supply chain, including the role of drug manufacturers and Pharmacy Benefit Managers (PBMs), and establishing maximum affordability payment rates for expensive drugs that create significant affordability problems for residents, building upon the tradition of health care cost scrutiny.”
The state of Maryland last year became the first state in the nation to successfully create a PDAB with the national and state NAACP chapters “playing a critical role,” as well as dozens of Black faith groups, labor, business and other non-profits, said Vincent DeMarco. DeMarco is president of the Maryland Citizens’ Health Initiative (MCHI), which led the PDAB initiative in the state. The Maryland board has won accolades from DeMarco.
“They are doing a very good job right now of examining what drugs are really high cost and what would make prescription drugs more affordable for people,” he says. “So, it’s really an exciting new way at the state level to address this problem.”
Meanwhile, the national NAACP has continued to press for national solutions. Following up with another resolution in September 2020, the organization continued to press for equity and affordability in prescription drug access. The resolution outlined the harsh realities that people like D.B. Wright have faced.
Quoting the 2019 AARP Prescription Drug Survey of likely voters aged 50 and older, the resolution said that of the 463 African-American respondents, “40% believed they might have to limit necessities such as food, electricity and fuel in the future to afford their prescription medication,” the resolution states.
Even with state assistance through programs like PDABs, advocates recognize that prescription drug prices are so out of control that some are still far too expensive.
“Maryland has made considerable gains in ensuring that quality health care is more affordable and accessible for residents of our state,” said a statement on the MCHI website. “However, expensive life-saving drugs — some of which are close to six figures for treatment — threaten to derail the progress made in expanding health coverage. To contain rising health care costs, we must contain skyrocketing prescription drug costs.”
The struggle to rein in high prescription drug prices has reached the U.S. Congress, but to no avail. U.S. Sen. Cory Booker (D-N.J.) last year introduced the Prescription Drug Affordability and Access Act, which would have created “an independent agency—the Bureau of Prescription Drug Affordability and Access—tasked with conducting reviews of drug prices and determining an appropriate list price.”
However, the bill, S.3166, was sent to the Senate Committee on Health, Education, Labor, and Pensions on Jan. 8, 2020, but went no further during the 116th Congress. Technically, with only a few weeks before Congress goes to Christmas break, this means the bill will likely die in committee but can be reintroduced in the 117th Congress when it reconvenes Jan. 3.
“In a country as wealthy as ours, it’s downright shameful that people have to choose between taking their medicine or paying for other basic necessities,” Booker lamented in a statement. “Every day, millions of Americans struggle to afford their life-saving medication while the manufacturers of these drugs profit hand over fist with limited to no oversight. On top of that, many of these drugs were developed through research funding from the federal government. We need systemic change that will meaningfully address the exorbitant, rising cost of prescription drugs and put the focus back on patients, not profits.”
Health advocates such as Sen. Bernie Sanders and Vice President-elect Kamala Harris — the former California senator who co-sponsored the bill with Booker — will likely not give up the fight. And given the incoming new Congress and White House administration, the NAACP has said it will support the efforts that Sharpton and Booker, a CBC member, have expended.
“Sen. Booker’s bill was an excellent first step,” said Hilary Shelton, director of the NAACP Washington Bureau and vice president for advocacy and policy. “The bottom line is that we believe that health care is a civil right. And that means that the full gamut of what is quality health care is very important. This is one of many issues that still need to be addressed and improved upon. It’s not the only issue and it’s not stand-alone. It’s crucially important in the categories of health care and economics. It’s an important component of a comprehensive health care system that provides high-quality health care for all Americans.”
The issue is no doubt headed for increased debate in Washington as the civil rights community applies the pressure. But outside of the growing political battle, there are real people waiting and fighting alone, says Wright, who recently received a court ruling allowing him 100 percent disability benefits; plus, Medicaid which now covers the cost of his medicines.
“It took four years to get disability insurance or Medicaid,” he said. “I would hope that the government grows a heart and recognize that the least that they can do is care for those who cannot care for themselves. I’m not talking about people who are trying to milk the system. I’m talking about real people who are having real challenges in life.”
This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.