Multiple Myeloma: The Challenges Of Timely Diagnosis And Access To Effective Treatments
Prevention and Treatment There are approximately 7,500 Canadians living with multiple myeloma.
Each year, 1,400 Canadians die from this incurable, but treatable disease. Multiple myeloma is the second most prevalent blood cancer, yet only 15 percent of Canadians can even identify it as a blood cancer.
A timely diagnosis is often a challenge. Early symptoms are generally vague, with most people first presenting to their doctor with fatigue, recurrent infections, or back pain. Given the relative rarity of the disease, vagueness of the presenting symptoms, and general lack of experience with myeloma by many primary healthcare practitioners, an official diagnosis takes an unacceptably long period of time. This increases the likelihood of bone and kidney damage and delays in the initiation of treatment. Research studies demonstrate that an early diagnosis, coupled with timely treatments with innovative new therapies, is essential in improving outcomes.
Delays in access to treatment
Time to diagnosis is not the only serious challenge facing myeloma patients. Delays in the access to effective new drugs — drugs that have demonstrated significant improvement in survival without excessive toxicity — also have a negative prognostic impact on myeloma patients.
"With many employers looking to cut costs, group insurance companies are responding with scaled-down benefits programs that in some cases limit coverage to only those drugs listed on a provincial drug formulary."
The introduction of effective new therapies over the past 15 years has had a remarkable positive impact on the prognosis and survival of myeloma patients. But the disease remains incurable and more new treatment options are needed.
Irrational drug funding system
In an ideal world, solid evidence-based medicine would prevail over political and financial decisions impacting drug access. In the real world of our complex and seemingly irrational drug funding system, myeloma patients not only face life-threatening delays to new treatments, but also unreasonably restrictive access to existing therapies that have proven to be effective.
Drug funding and access issues arise primarily from decisions made by the provincial and territorial health ministries, impacting patients covered under public drug programs or being treated in a hospital. Moving forward, the problem can potentially be compounded by company-sponsored group insurance plans. With many employers looking to cut costs, group insurance companies are responding with scaled-down benefits programs that in some cases limit coverage to only those drugs listed on a provincial drug formulary.
Patients and their families need to become better informed and more actively engaged in well-coordinated advocacy efforts to demand equitable access to life-saving treatments. Myeloma Canada has led several successful advocacy efforts in the past and is preparing for many more such campaigns to ensure that our community will have access to the promising new treatments that are on the horizon.