By Terry Wilcox
“My name is Mariah. I have RA. It doesn’t have me.”
These inspiring words greet anyone who visits the personal blog (FromThisPointForward.com) of Mariah Leach: “From This Point. Forward.” Mariah’s site chronicles her daily battle with rheumatoid arthritis (RA), a disease she was diagnosed with when she was only 25 years old.
After spending time on Mariah’s blog to understand her story, I had the privilege to speak with her recently, and our conversation allowed me to see even more clearly that she wakes up every day with a fighting spirit— ready to do battle for herself, for her family, and for the future.
Mariah was diagnosed with RA eight years ago while pursuing both a law degree and a master’s degree in environmental policy. As she charged ahead to pursue her passion, she never imagined she’d wake up one day with pain in her toes that would ultimately spread throughout her body. It didn’t take long before she couldn’t go about her daily life and do the things that we all take for granted.
But Mariah never gave up. As she writes on her blog,she knew she “would have to start by taking my new life one day at a time.” More than 2,000 days have passedsince then, and she’s lived a lot of life in that time.
Since 2008 Mariah has given birth to two beautiful children, who are now two and four. This was an incredible feat given her condition. As she told me, “The major part of my RA journey was having my kids after my diagnosis.” No wonder: this required her to temporarily stop taking the drugs that made her more comfortable day to day. “There was no information out there about what it would mean to stop these medications while pregnant,” she says, “and that unknown was scary”— and an understatement, to say the least.
She made it through, though, and she continues to flourish nearly a decade after the diagnosis. What keeps her going? To hear her tell it, it’s equal parts courage and medical innovation.
Mariah depends on a wide number of revolutionary medicines to keep her functioning. In addition to seeing her doctor more than most, she takes a biologic “roughly every five months,” along with three to four other prescriptions at any given time. She takes them all, she says, so she “can continue to work and keep up with my family.”
One thing’s for sure: This regimen isn’t cheap. Mariah points out that the average family spends $4,270 per year on prescriptions and that she surpasses that by a very wide margin. But she and her family know it’s worth it. And between the high-deductible insurance plan offered by her husband’s employer and co-pay assistance programs made possible by the pharmaceutical companies, Mariah has been able to pay for her medicines. Amazingly, she also volunteers for the Arthritis Foundation and has raised more than $30,000 for research into the condition that she and millions of others suffer from every day.
Peering into the not-too-distant future, Mariah has cause for both optimism and concern.
She is optimistic that she can continue to excel thanks to the drugs she takes now and new treatments that could be brought to market in the years ahead. Medical innovation has literally saved her life. She depends on it. “Right now I am on my fourth biologic, and there are only eight or nine approved,” she tells me. “After that I may need to restart the search for a medication that works, so I certainly support research and innovation for new arthritis medications.”
But she’s pessimistic about some disturbing trends in medicine that would prevent such innovation— and even jeopardize her continued well-being; namely, the recent decision by both CVS Pharmacy and Express Scripts to remove numerous drugs from their formularies in 2017.
The patient advocacy organization Patients Rising has been taking a hard look at the reason for this potentially devastating change among pharmacies that supply patients with necessary medications. What we have uncovered is disturbing: In 2015 the Institute for Clinical and Economic Research (ICER)— which has existed quietly for almost a decade with the stated purpose of analyzing the cost-effectiveness of various medical tests, treatments, and procedures—received a $5.2 million grant from the Laura and John Arnold Foundation and began what it calls the Emerging Therapy Assessment and Pricing Program. Through this program, ICER now develops analyses for major illnesses that evaluate patients based solely on the cost of their treatment; the institute provides this “research” to insurers—and, more frighteningly, to federal bureaucrats who have expressed interest in using the group’s work.
In January 2017, ICER’s Midwest Comparative Effectiveness Public Advisory Council will convene in St. Louis to discuss arthritis medications, many of which have kept Mariah healthy and able to work and keep up with her family for eight years. The potential impact of ICER research on which drugs will be available to patients is frightening, and it’s an issue all patients should be aware of and learn how to navigate with their doctor.
Eight years after diagnosis, Mariah is still doing what she said she would: living life one day at a time. And her life is richer than she ever thought possible, despite RA. She’s so thankful for the quality of life she has been able to maintain through the treatments she has had access to, as are her husband and their two kids.
Surely, Mariah deserves the chance to keep making her brave statement: “My name is Mariah. I have RA. It doesn’t have me.”
About Patients Rising
Voices of Value is an initiative of Patients Rising aimed at capturing the indelible voice of patients from across the country speaking about their own care concerns. Patients Rising is a national patient advocacy organization committed to ensuring that patients have a fundamental right of access to vital therapies and precision medicines, and that the provider, payer, and pharmacy sectors put the frontline interest of the patient first. Patients Rising will educate, advocate, and communicate so the patient voice is heard, access to new therapies is streamlined, and the pipeline of progress is not disrupted. There is power in knowledge, and there is strength in numbers. Patients Rising will lead the fight for the right patient to receive the right treatment—right now. Join us!