“The system is rigged.”

This phrase applies to many situations, but perhaps it’s at its worse when it is applied to the unfair world of prescription drug prices, where many patients are simply being priced out of being able to afford their much-needed medications thanks to Big Pharma.

Big Pharma and the Federal Government

Most of us can agree that prescription drug prices are out of control, with drug corporations stacking the deck against Americans of all socioeconomic classes. Many of these companies have a monopoly on pricing, paired with powerful lobbying groups that spend billions of dollars to persuade Congress toward pushing laws and regulations in their favor. The proof is in the pudding—Big Pharma has spent a whopping $2 billion since 2003 on lobbying efforts in Washington, D.C.

Big Pharma depends on the government’s inability or unwillingness to negotiate on prices. The federal government has the largest medication buying power in the world. Any other business with that kind of power is almost guaranteed to negotiate prices, but the government does not, particularly with Medicare, putting the drug corporations in complete control, dictating the pricing of Medicare insurance. In an ideal world, the roles are flipped, with the government in charge of pricing the medications going to members of their own government-funded program.

Medicare is at the top of the food chain, so to speak, and once the government agency sets their price, that price has a trickle-down effect into the entire health care system, with a lot of people able to slice off their piece of the proverbial pie as those Medicare drug prices provide indirect benefit and affordability.

They’re all in on it—the doctors and hospitals that mark up the prices and the pharmacy managers who make more by jacking up prices as well. The suckers are at the bottom of the food chain—regular people and patients who are good, decent taxpayers, who get stuck paying the bill.

Who’s Suffering the Most?

It is easy to assume that Medicare patients are living comfortably as seniors, rolling in the dough and loving retirement. However, nothing could be further from the truth. The average Medicare beneficiary has a median income of around $26,000 per year. Some patients spend up to $11,000 per year on out-of-pocket costs for Medicare drugs. Imagine spending half of your income on medication alone. These patients are being crushed by the costs while Big Pharma gets the better half of it.

Sure, seniors could just grin and bear the abuse, coughing up the money to pay for their medications, but again, there are far more serious consequences beyond finances–people are forced to choose between three meals a day and their medications, while many skip doses to be able to afford their prescriptions, and as a result, suffer complications that may lead to greater medical expenses down the road.

Not All Heroes Wear Capes

In an unfair power balance between Big Pharma and its consumers, Patients for Affordable Drugs is trying to level the playing field through advocating for patients who need to go as far as rationing their prescriptions just to be able to afford the purchase price. The Patients for Affordable Drugs group wants to stop it—all of it. They want Big Pharma to stop charging outrageous prices for new specialty drugs, and they want them to stop doubling or tripling prices for tried-and-true name-brand drugs.

So, what is the Patients for Affordable Drugs group actually doing about all of this?

The group’s goal is to “break the monopoly pricing power of the drug corporations.” They want to change laws, restoring them to competitive pricing and ensuring that generic-class drugs enter the market sooner. They’re calling for the pharmaceutical companies to have transparency regarding pricing, so Americans can see just how much every patient in Big Pharma’s consumer pool is benefitting the companies financially.

Naturally, Big Pharma uses commonplace justification to explain their astronomical prices. These companies say they must charge this way in order to recoup the money they put into research and development. The old adage is that for every ten failed drugs, the company produces one successful one.

“Don’t be fooled,” says Patients for Affordable Drugs.

Big Pharma still makes oodles of money even after funding research and development of new drugs; they are also consistently able to pay their shareholders a tidy sum.

Patients for Affordable Drugs says that these companies can keep doing those things privately, but should no longer be allowed to dictate prices to the government, especially for public programs. The advocacy group is the only independent national patient organization that is focused exclusively on this issue. They want to achieve these policy changes, so David Mitchell, who founded the non-profit organization, says he will fight tooth and nail to do just that.

Mitchell knows first-hand what he’s fighting for: he has an incurable blood cancer and completely relies on these drugs to stay alive. Mitchell’s wife, Nicole, has had the same experience as a breast cancer survivor.

The group involves several key pieces of their overall platform:

• Standing up to drug corporations and pharmacy benefit insurance companies to demand the lowering of prescription drug prices
• Educating patients to support these policy changes
• Working at the state and federal levels to enact these changes
• Convincing people that it is drug innovation and reasonable process can co-exist (there’s enough money in the system to do both)

Advocacy in Action

The group has certainly employed some novel tactics in their efforts to give patients back their rights.

In July, the group sent patients to the U.N. General Assembly in New York City, on the premise that patient voices are often missing from discussions about rising drug prices. The U.N. was joined by the World Health Organization for a July 5 hearing in which the two organizations listed non-communicable disease management as a top priority. As the Patients For Affordable Drugs group pointed out, drug prices are a major factor in why these diseases are not better controlled.

Indeed, the group is trying to bring the patient voices into the forefront. They regularly share stories on their website, telling of patients who have made grave sacrifices in order to be able to afford their medications.

One story tells of multiple myeloma patient Pam Holt, who had to refinance her home just to afford the medications to stay alive. They also told the heartbreaking story of father Clayton McCook who constantly lives in fear that he will one day no longer be able to afford his daughter’s life-saving insulin. Mother Juliana Keeping spends thousands per year on her child’s cystic fibrosis drugs. The group is bringing these important stories and valuable perspectives to the discussion.

A Popularity Contest You Don’t Want to Win

The group also uses other, more hard-hitting tactics, such as their newly announced campaign to have patients vote on the “Most Hated Pharma CEO of the Year.” The group says that while the majority of pharmaceutical corporations exploit patients to rake in profits, there are a few companies and CEOs that stand out from the crowd in their unabashed greed.

In true democratic fashion, Patients for Affordable Drugs has turned to the American people to get their vote for worst of the worst. They’ve narrowed the field to four finalists:

• AbbVie CEO Rick Gonzalez: the company makes Humira, the world’s best-selling drug, which sells at a whopping $5,000 per dose. Gonzalez made nearly $20 million in 2017. AbbVie continues to flood the system with over 100 new patents in an effort to block other companies from making a generic drug version. They’ve even been accused of striking some pretty shady deals with Humira competitors.
• Vertex CEO Jeffrey Leiden: the company makes cystic fibrosis drugs that cost some families more than $300,000 per year. With a 2017 salary of $78 million, Leiden is the third highest paid CEO in health care.
• Eli Lilly’s CEO Dave Ricks: The company makes Eli Lilly’s version of insulin, called Humalog. At more than $300 per dose, the drug’s price has increased 1,157% in the last 20 years. Patients are well known for rationing their supply of Humalog, many dying in the process. Interestingly, the scientists who originally created insulin over a century ago actually gave away their rights to the drug, never profiting from it in order to give everyone access to the life-saving medication.
• Allergan’s CEO Brent Saunders: Allergan makes the blockbuster dry eye drug Restasis, and has been sharply criticized for the incredible lengths they’ve gone to in order to stop generic competition. They charge $600 a pop for the eye drops, and amazingly, Allergan gave its patent rights to the St. Regis Mohawk Tribe. As a sovereign entity, the patent is secure with the tribe, thus ensuring protection for Allergan’s billions from the drug.

Patients For Affordable Drugs will announce the contest results in early September, hoping to send a clear signal to Big Pharma that Americans are watching their bad behavior and simply won’t tolerate it any longer.

 

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