Multiple sclerosis is a disease that may not show symptoms, and most importantly, no two types of the disease are the same. So, employers may find it difficult to effectively engage and accommodate employees with MS. However, with a comprehensive case management program that also focuses on specialty pharmacy and simple accommodations, employers can foster a welcoming workplace atmosphere while saving on insurance and pharmacy costs.
MS affects over 400,000 Americans, estimates the National Multiple Sclerosis Society. Approximately one out of 750 people will develop it over their lifetime, cites Prescription Solutions. Most people are diagnosed between age 20 and 50, many in the prime of their career.
"Lots of people with MS really, really want to work," says Kim Calder, director of federal health affairs and insurance policy at NMSS. Yet, after only 10 years living with the disease, only 40% of people with MS are in the workforce.
An employer can "try to create an environment of support and openness to disability issues in general. But also, it's important for leadership and HR to think about invisible disabilities as well," stresses Steve Nissen, senior director of employment and community programs in NMSS's National Capital Chapter.
Though MS sufferers can lack symptoms, it's hard to target with traditional worksite disease management programs.
"Disease management hasn't penetrated MS to the extent it has for diseases with higher prevalence and more accessible or simple interventions, like asthma or diabetes," says Calder.
In fact, Dr. Paul Berger, chief medical officer at Aon Hewitt, argues that case management might be more effective for employees with MS, as a case management program can help employers monitor those cases that vary widely from one another.
"Frequently, employers are undervaluing case management programs these days. This is very frustrating because the fact is they are extremely important," Berger says. "There is a wide array of diseases that you are going to find in case management where you should be aggressively trying to identify people and trying to coach those people."
Case management essentials
There are five key parts to creating a successful case or disease management program:
1. Organize data around a person
2. Identify and stratify enrollees first through predictive modeling or reaching out with a phone call from a health care professional letting them know that their company offers free, confidential and secure programs.
3. Enroll those who would benefit from the program's services. It's not enough to just ask - the nurse on the outreach hotline must actively recruit them.
4. Foster engagement between nurse and patient. "Frankly, the value of these programs is helping the doctors carry out their orders," explains Berger.
5. Highlight the importance of reporting and analytics. "Report what you've accomplished clinically, financially and from a patient satisfaction standpoint," Berger says.
"Doing all those things in concert really will help chronically ill people feel that they belong and will help the company execute on their case management and disease management programs a whole lot better than if they don't do those things," says Berger.
He adds that to make a workplace community more welcoming to people with chronic illnesses like MS, senior management must voice their support.
Lastly, HR/benefit teams should make communication around the case management program an ongoing process, not just occurring during open enrollment.
Providing benefits supports
While case management programs are helpful in getting employees to care about their health, "a robustly comprehensive health care insurance benefits package is what people really need. The hallmark of MS as a disease is it's incredibly unpredictable. We often say there are no two courses of the disease that are exactly alike," explains Calder.
Nissen agrees: "No two people with MS are the same. Since there is such great variability with MS, it would be a disservice to employees to assume that because they have MS, they need universal things. It's critical for the employer to look at each individual as an individual."
What many MS patients will need is access to neurologists, so it's important to have a deep list of specialists who are in the network, preferably ones specializing in MS, or at least those who have significant experience treating people with MS.
Many sufferers also will participate in rehab therapy, which can include physical, occupational and speech therapy.
Mental health coverage is very important. Depression is extremely high among people with MS, higher than for people with chronic disease in general. This may be the result of coping with the disease, lesions in the brain from the disease itself or side effects of drug treatments.
Drug therapy is also costly and complex, but the best way to hold the disease at bay is with drugs to slow the rate of progress and onset of disability of the disease. Experts advise employers to not only ensure that insurance covers prescription medications, but also durable medical equipment, like canes, scooters and wheelchairs.
Pharmacy benefit managers argue that including specialty pharmacy elements into a case management program will help patients and lower costs. By driving increased medical adherence, one can reduce the number of early relapses, which lowers costs considerably, according to a Prescription Solutions study.
"Specialty pharmacy has demonstrated the ability to drive increased medication adherence, which leads to improved outcomes. Also, [it leads to] things such as decreased medication waste and increased patient satisfaction. So specialty pharmacy is one tool to improve those elements," explains Dr. Bradford Curtis, vice president and senior medical director, clinical analytics and outcomes research, Prescription Solutions.
The MS-DTM program Prescription Solutions Specialty Pharmacy engages patients through a variety of means, including beginning with a high-touch phone consultation with a clinical pharmacist or registered nurse. During the call, assistance is provided on a range of topics including disease education, medication management, side effects, stress, lifestyle issue - including role of exercise and nutrition - home safety and, if needed, financial assistance resources.
But while prescription and other benefit supports for MS patients can be costly, accommodations for them at work aren't - most don't cost anything.
"For some of the more common symptoms of MS, like fatigue, flexible schedules can often be one of the most beneficial accommodation strategies, and there is usually no cost affiliated with that," Nissen says. For example, employees could come in later and leave later to avoid the stress of rush hour traffic. Telecommuting, even if they just have a day or two a week at home, can help as well. Employers might also provide a quiet place to rest or nap at work.
Sometimes people with MS have vision difficulties, which can be eased by accessibility features built into technology, like making the font size larger on a computer or getting a larger monitor. They may also become sensitive to temperature, so putting a fan on their desk if they can't control office temperature would help.
"These types of accommodations are pretty basic, but can make a huge difference in terms of allowing that employee to be as productive and proficient at doing their job as they possibly can," says Nissen. "People with MS and disabilities can do just about anything; they just may need some accommodations in order to do the essential functions of that job," adding that because MS is an adult-onset condition, patients "are usually highly experienced and skilled, and can definitely benefit employers."
A mysterious disease
No two people will have exactly the same experience of MS because the disease course, of which there are four categories, may appear very different from one person to another. The progress, severity and specific symptoms can also vary and are widely unpredictable. For this reason, it can be difficult to diagnose.
The disease attacks the central nervous system, consisting of the brain, spinal cord and optic nerves. Symptoms can be mild, such as numbness in the limbs, to severe, such as paralysis or loss of vision. Other more common symptoms can include fatigue, bladder dysfunction, dizziness and vertigo, cognitive dysfunction, pain or depression.
Epidemiologists who have studied the disease are still unsure what is the cause of the condition. There are many theories, including immunologic (in which scientists have identified immune cells responsible for attacking the body), environmental, infectious, and genetic.
MS is two to three times more common in women than men. This gender disparity has spurred some researchers to look at the role of hormones in MS. Also, there are fewer outbreaks closer to the equator, leading some to examine whether the sun and vitamin D may play a part.
In recent years there have been more diagnoses, but experts believe this doesn't necessarily mean there are more cases, simply that there is more awareness of the disease.
While there is no cure yet for MS, many prescriptions have recently been introduced on the market, which can help modify the disease course, treat exacerbations and manage symptoms.
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