There are ten Biologics currently available to treat rheumatoid arthritis (RA). That does not mean you have access to all of them.
Insurance companies are famous for the obstacles they place in the way of our access to expensive drugs. For instance, they often use fail-first policies. This means that a number of less expensive medications have to be tried with unsatisfactory results before they will approve a Biologic. We live in an era when rheumatologists treat RA early and aggressively to maximize the chances of remission. But this type of policy leaves us at risk for developing damage while we try medications that may not be what our doctors believe is the best option.
But it’s about to get worse.
The rising cost of medications
Everything is getting more expensive and that goes for medications, as well. Some of these meds are getting very expensive, very quickly. One case in point was the EpiPen debacle. In the summer of 2016, the makers of EpiPen raised the price of a pack of two auto injectors of this life-saving medication to $600. This is an increase of more than 500 percent compared to a few years ago. Congress is currently investigating this issue and the manufacturer is taking steps to launch a generic version of EpiPen as a result of public and government backlash.
The Biologics used to treat RA and other types of autoimmune disease have also increased in price. Already costing thousands of dollars a year, these increases are having an impact. Most people can’t afford these kinds of medications on their own. Instead, they rely on insurance companies, financial assistance programs, and manufacturer rebates for the drugs that enable them to live their lives.
In the U.S., pharmacy benefit managers (PBMs) administer drug benefit programs for corporations, insurance companies, Medicare Part D, and others. PBMs are third-party companies that process the prescriptions paid for by the insurance companies and other organizations and agencies that are covered. Ideally, PBMs can use their size as clout in the negotiating process with the pharmaceutical companies to, for instance, lower the cost of medications.
And that is exactly what Express Scripts (a large PBM), says it is doing. It has recently recommended to insurance companies and employers that they cover fewer high-cost drugs, which would include Biologics. Theoretically, this would force the hand of pharmaceutical companies, making them lower their prices.
Unfortunately, history has shown that this does not happen. On the RheumNow website, Jack Cush, M.D., argues that this will likely limit the choices of Biologics to those made by companies that can afford participating in high-cost rebate programs (said rebates are returned to PBMs), while certain other medications are removed altogether.
Consequences for people with RA
This can be a real problem for people with RA and other types of inflammatory arthritis who often respond differently to medications. What works for me may not work for you and vice versa. It is quite common for people to have to try several different medications before finding one that works for them. In addition, a person’s immune system may find a way around the medication, require them to move on to another drug and potentially several other drugs in the future.
Limited choices have a real and profound impact on the lives of people who live with RA. The potential consequences are severe, bringing us back to a time when the disease was left to wreak havoc on our bodies.
The consequences are not just personal. The fewer people who have well-controlled inflammatory arthritis, the heavier the burden is on the healthcare system. Uncontrolled RA often leads to disability and an inability to work. In other words, not treating people with the drugs that are most capable of controlling the disease costs our society a lot of money.
What you can do
Election Day is just around the corner, and it is an opportunity to make your voice heard. More than ever before, lawmakers who want to be elected or reelected are talking to their constituents.
Make sure that your concerns are heard, especially those related to your chronic illness. This can include access to healthcare, the high cost of medication, the effect of the war on opioids on pain management, as well as the efforts of PDMs to restrict access to high-cost drugs. Make sure the candidates understand that not treating these types of diseases — whether it is RA, other types of inflammatory arthritis, diabetes, multiple sclerosis, and many others — has a real and significant impact on the financial health of their constituents and the nation.
I get it. We all get it. Biologics cost a lot of money. It would be better if RA could be controlled with cheaper medications. Unfortunately, this is often not the case. Just as unfortunately, the cost of these medications is passed on to the people who buy insurance, as well as the programs that support people who need to medications. Something has to give, but I do not believe restricting access to Biologics is the answer. In this game of corporate chicken between PDMs and pharmaceutical companies, the consequences are paid by the people who need the drugs. We cannot go backward in the treatment of RA — it is simply not ethical.
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain_. _
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.