Mom's Story

A discussion about Mom's Story and MS…

Archive for the tag “Healthcare”

Prevalence of MS More Than Doubles Estimate

A new study funded by the National MS Society has confirmed that nearly one million people are living with MS in the United States, more than twice the original estimate from a previous study. This breakthrough is a pivotal moment in the MS movement as a scientifically sound measure of prevalence helps us better understand the disease and its impact. With twice as many people living with MS, solutions for MS are now twice as important.

In addition to the main paper outlining these results, two companion papers providing background information on prevalence in the U.S. and reviewing the study methods were also published in the February 15, 2019, online issue of Neurology®, the medical journal of the American Academy of Neurology.

Q: What is prevalence and how is it different from incidence?
A: Prevalence is the number of people living with a disease. Incidence is the number of people newly diagnosed with a disease within a given period of time.

Q: How many people are living with MS in the U.S. according to the new prevalence estimate?
A: Nearly 1 million people (913,925)

Q: How is the new estimate different than numbers used before?
A: More than twice as many people are living with MS than was previously thought.

Q: Where did the earlier MS prevalence number of 400,000 come from?
A: The previous figure of 400,000 was an estimate calculated from population growth since the national study of MS prevalence that was published in 1981.

  1. How did the prevalence number jump from 400,000 to 913,925?
    A. As part of a Society-funded study, researchers developed a novel method for estimating the number of people who are living with MS using large medical claims datasets. This method has produced a higher, and likely more accurate, count.

Q: Why is this information important? And what does it mean for people affected by MS and the work of the National MS Society?
A: Having this scientifically sound prevalence estimate will facilitate a better understanding of the needs of people with MS and the economic burdens imposed by the disease on families and society. It will be a starting point for researchers to understand if MS is increasing, or if there are MS geographic clusters that hold clues to factors that trigger MS. These data will also help ensure that the National MS Society is able to connect to and support all people affected by MS.

Q: Does this mean more people are getting MS than before?
A. We don’t know. Since solid information on the number of people being diagnosed with MS has not been available, it has been difficult to tell whether more people are getting MS or if the total number is just a reflection of overall population growth, better diagnostic procedures, the availability of disease modifying drugs, or other changes in the MS landscape. Going forward, this should become easier. Outside of the U.S., some studies have reported increases in the incidence of MS. More work is needed to understand all the factors that led to this increase.

Q: What was the process to reach this new number and why has it taken so long to get an updated prevalence number of people living with MS in the U.S.?
A: After an examination of what it would take to identify a scientifically sound estimate, the Society funded the work and established a work group of experts across the fields of epidemiology, statistics and health care. This group labored for nearly four years to develop and implement a plan for estimating prevalence as rigorously as possible given the sources of information available. They obtained the proper mix of administrative datasets, developed and validated a formula to identify people with MS then applied it, and the findings were published in a peer-reviewed journal.

Q: Will this change the global number?
A: Yes, this will change the global number (which is most recently estimated at 2.3 million). The global number is calculated through input from MS societies across the globe to the MS International Federation. The MS International Federation is planning to do an update of the “MS Atlas” and when complete, the global number is likely to increase not just from the new U.S. estimate but from other nations as well.

Q: How confident are we in this number?
A: A team of experts led a thorough study based on a sound, scientific process and followed the peer-review process to affirm these results. We have trust and confidence in the approach and methodology that produced these results. In addition, the figures for the US are as high or higher than figures found in other countries using a variety of different methods to calculate the number.

Q: Will this new prevalence estimate help us get to a cure for MS faster?
A: Research breakthroughs related to what causes MS and how to cure it are happening at a faster pace than ever before. Having sound information on how many people are living with MS and who gets MS is an important pathway to a cure.

Q: When and how will the prevalence number be updated again?
A: The National Neurological Conditions Surveillance System, which was authorized in 2016 through the 21st Century Cures Act, has been funded and will be able to update prevalence estimates on a regular basis. This is a culmination of more than a decade of work by MS activists and others across the neurologic community. This system will provide important demographic data to help researchers move more quickly toward cures for the millions of people who live with diseases like MS and Parkinson’s.

Q: Why do we only have an estimate of the number of people with MS, versus knowing the exact figure?
A: Unlike for certain infectious disorders, there is no requirement for healthcare providers to report to health authorities when a person is diagnosed with MS. Although a nearly exact count could be made by contacting doctors, hospitals, and other health care facilities, such a study would be prohibitively expensive and almost impossible to implement.

Advertisements

Best MS Books (29 books)

29 books based on 16 votes: Break The Spell by A.M. Bostwick, Mom’s Story, A Child Learns About MS by Mary Jo Nickum, Multiple Sclerosis: The Questions Y…
goodreads.com

New MS Research

This month in Lancet Neurology, a Canadian research team reports there is a pre-clinical phase in MS. The study used health administration records from four Canadian provinces (British Columbia, Saskatchewan, Manitoba, and Nova Scotia). Due to the nature of the Canadian health-care system, these provinces have computerized health-care records on >99% of residents, including hospital discharges, physician billing, prescription on records, and dates of all medical visits – all records can be linked by a unique health-care number assigned to individuals. Using these records, medical histories for 14,428 MS cases and 72,059 controls were included for this study. They compared health-care utilization in the same five-year period prior MS diagnosis between cases and temporally matched controls.

Interestingly, five years before a MS diagnosis, the number of hospital admissions for people who eventually developed MS was 26% higher than controls, and this increased to 78% higher a year before MS diagnosis. A similar pattern was observed for physician billing (5 years before diagnosis: 24% higher in people with MS than controls; 1 year before diagnosis: 88% higher in people with MS than controls). There was also a substantial increase in the number of prescribed drug classes in people with MS compared to controls (5 years before diagnosis: 23% higher; 1 year before diagnosis: 49%  higher). These results clearly demonstrate a pre-clinical stage for MS where subtle symptoms exist before clinically definitive symptoms (also known as a prodromal stage). With further research, we can explore these subtle symptoms and hopefully diagnose MS earlier and initiate therapeutics earlier, slowing the rate of progression of MS.

From: When do MS symptoms start? By Farren Briggs PhD, ScM; The Accelerated Care Project for Multiple Sclerosis

Study on Escalating MS Therapy Costs in the US Reported in the Journal Neurology

The journal Neurology has recently published a compelling report on a study conducted by a research team at Oregon State University and Oregon Health & Science University that examines the pricing trajectories in the US of disease modifying therapies over the last 20 year and assesses the influence of what appear to be unexplained rising prices.

Access to affordable, high quality healthcare is essential for people with MS to live their best lives. The evidence tells us that early and ongoing treatment with an MS disease modifying therapy is vitally important to controlling disease activity, delaying the accumulation of disability and protecting quality of life. However, today’s healthcare reality is that the high cost of these important therapies prevents full access to them.

The Society is deeply concerned by the rising costs of MS therapies and the negative impact that this has on individuals being able to access these treatments. People with MS must have full access to affordable health care. The Society is committed to bringing together all the stakeholders on this issue to find viable solutions to lower the overall costs of MS care and expand the medication formularies available to people with MS, which too are affected by the escalating prices.

While Society endeavors continue to advance on addressing policy and pricing issues, the Society focuses on helping to ensure that people with MS have access to the therapies they need by assisting them to tap into available options and assistance programs. Our work is grounded in our Access to High Quality Healthcare Principles, which are the foundation for all of our actions.

To establish these strategic principles, the Society convened a task force comprised of people with MS, family members, health policy experts and healthcare providers. The task force also listened to the concerns and thoughts of people with MS through extensive social media monitoring, surveys, and feedback opportunities. The principles were adopted by the Society’s National Board of Directors in November 2014.

We are currently working to understand the complexities of the healthcare system, the interrelationships and points of influence. We have explored data on the formulary restrictions, met with numerous potential partners on these issues and created an extensive database of legislation at both the state and federal levels designed to increase access to medications in order to determine the best path forward for people with MS.

Post Navigation