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Incidence and Prevalence of MDS Across Patient Populations


Ryan Haumschild, PharmD, MS, MBA, leads expert panelists in a conversation exploring the prevalence and clinical burden impact of MDS.

Ryan Haumschild, PharmD, MS, MBA: As we start to look at benefit design and patient-reported outcomes, quality of life comes into play [in a big way] there. But before we get to that piece, I want to talk a little about the prevalence. Dr Fazal, I’d love to get your input on this. When we think about myelodysplastic syndromes [MDS], how common are they nationwide? What’s the incidence and prevalence in the United States? How does this incidence change with age? In my experience with treating these patients, it tends to be the older population.

Salman Fazal, MD: Myelodysplastic syndromes are rare but not so rare that you won’t see it. When we think about any disease, we talk about 2 numbers. We look at the incidence and the prevalence of the disease. The incidence refers to new cases. About 20,000 new cases of myelodysplastic syndromes are diagnosed every year. When we talk about prevalence of the disease, that includes patients who had been diagnosed and are living with the disease. If you look at the prevalence of the disease, there are between 60,000 and 175,000 cases of myelodysplastic syndrome in the United States.

If you look at the prevalence of the disease compared with age, the prevalence for the general population is about 3.4 per 100,000 patients. However, the prevalence goes significantly higher for older patient populations. If you look at patients older than 65 years old, which is based on the Medicare billing data, the incidence in that patient population is about 65 cases per 100,000 patients. That’s a pretty significant increase for patients above age 65. The median age of MDS is about 71. The older patient population is at higher risk of developing myelodysplastic syndromes. It’s one of the risk factors.

Ryan Haumschild, PharmD, MS, MBA: We’ve talked about the aging population. You did a great job characterizing what the patient population looks like across the country, but I want to come back to the quality of life. Dr Weaver, I’m curious about your thoughts because quality of life and patient-reported outcomes are growing in the literature. We’re seeing a lot of secondary outcomes focusing on this. There were a lot of questionnaires and validated scales evaluated. When I think about myelodysplastic syndromes and we hear about the treatment strategies, this impacts the patient. It might impact the absenteeism and their activities of daily living. As a payer, what are your thoughts on patient-reported outcomes and quality of life? Maybe you want to bring it back specifically to MDS, but broadly, what are your thoughts on it? How do you see those data being leveraged as we move forward in evaluating the spectrum of coverage and care?

Jay Weaver, PharmD, MPH: I appreciate the question. I have to start with a bit of a diatribe that as a clinician first, quality of life is important. We think about the suffering. We think about patients and their daily activities that are impacted by these diseases, and it’s concerning.

As commentary to the US health care system and the whole benefits industry, undervalued quality of life is an indicator because it is hard to measure and doesn’t have a hard dollar offset savings of medical costs. Unfortunately, the US health care system uniquely undervalues [quality of life] compared with the world. I’m excited that there’s a paradigm shift, and those things are beginning to come into focus for a number of reasons. One driver of that has been some of these third-party agencies, such as Kaiser [Permanente]. As they do evaluations, some of that evaluation of the value of therapies captures things like quality of life.

The other thing that has brought this into the forefront of consciousness is that there’s no way to think about what has been going on for the last 3 years with the pandemic, especially in the United States. Think about the workforce impact of diseases. When I talk to employer groups, they commonly say, “I have to have people showing up to work and, when they’re here, feeling well enough for work. I have a shortage of staff. I have shortages of people being able to engage for all sorts of reasons.”

The price of staff has gone up, and the number of skilled employees in some industries has waned. Employers are beginning to focus on absenteeism, presenteeism, and how effective we are when we work. All those things are becoming more valued than they have been in the past. It’s an exciting time for me as a clinician, because as a person who works more on the insurance and benefits industry side, I can take that forward as a value point in thinking about therapies. I couldn’t before.

Ryan Haumschild, PharmD, MS, MBA: Those are great comments, and I appreciate you bringing us back to the clinical burden and caring about the patient but also balancing that with managing the benefit, and how we evaluate these therapies, considering the primary and secondary outcomes.

Transcript edited for clarity.

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