Archive for ‘Living Well With MS’

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Multiple sclerosis causes anxiety for many people living with the condition. With the COVID-19 pandemic, added anxiety comes from people with MS or their family members being furloughed or terminated from employment. How am I going to stay on my medications or afford them? Will I still be able to see my doctor if I lose my health insurance? How can I pay for an MRI scan?

In United States, the disease-modifying medications are generally free for those patients without insurance or underinsured if not on government insurance (Medicare or Medicaid). Your healthcare provider simply needs to submit a prescription (called a service request form or SRF) to the pharmaceutical company that makes the MS medication to access the financial assistance. These programs have no co-pay if you qualify and apply to people already on a specific disease-modifying MS medication or starting a new medication.

For those people on Medicare, independent charitable patient assistance programs can help with co-pay assistance since the U.S. government does not allow the pharmaceutical companies to provide medications with no co-pay. The pharmaceutical company that makes your medication can help you figure out which patient assistance programs to apply for co-pay assistance. If your income is too high, you may not qualify for patient assistance with Medicare (which tends to occur when retirement income is too high or the person with MS is on Social Security Disability while their spouse working).

To cover medications, doctor visits and medications, Medicaid might be an option if you financially qualify depending on your own state’s requirements. Most large healthcare organizations offer charitable care for those in need which generally requires an application to coverage/assistance for doctor appointments, medication infusion costs and MRI scans.

The best resource for MRI scans is the MSAA MRI Access Fund. There’s an online application for free MRI scans of the brain and cervical spinal cord for people with multiple sclerosis or in the process of trying to diagnose MS. The MSAA can also help with MRI scan costs of completed scans. The MSAA MRI Access Fund is supported by Biogen and Sanofi Genzyme.  MSAA also has durable medical equipment assistance for items from cooling vests to wheelchairs.

A great resource for medication cost savings for medications is GoodRx. After entering the medication name and your ZIP code, a list of pharmacies and price at each pharmacy is listed plus coupons are generated. GoodRx can save hundreds of dollars on a single medication in one month.

Another option is participating in a clinical trial. Most relapsing clinical trials currently do not involve placebo so you would receive active treatment, although may be experimental.  MRI scans, study visits, labs and sometimes transportation costs to centers are covered by the study and free to MS patients participating in the trial.

Never assume you don’t have options. Please reach out to your healthcare team who are committed to keeping you on track for your MS care!

MS Living Well values educating people living with MS globally since 2007.  In this developing coronavirus pandemic, the goal is provide information specific to those living with MS to help determine your risks and ways to protect yourself.  For more info see the CDC’s website on COVID-19.

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EVALUATE YOUR RISK:

A.  LOCATION: plays a major factor.  Higher risk countries are changing: now Europe, United States and Iran have the most new cases (updated March 19, 1920).  The situation is changing rapidly so important to be aware of local evolving risk.  Many people may be carriers of the virus without symptoms.  People can become infected if within 6 feet of someone infected with the coronavirus who coughs or sneezes or by touching surfaces infected and then touching your face, nose or possibly your eyes.

B. IMMUNE STATUS:  Many multiple sclerosis medications could put a person at increased risk of serious complications from coronavirus infection including pneumonia or even death.  All FDA-approved medications to change the disease course of multiple sclerosis impact the immune system.  As a consequence, your ability to fight the viral infection may not be as robust.  Many MS medications have been studied to make sure that people can still mount an immune response to new virus while the medication is being taken.

Ocrevus, Gilenya and Mayzent have been associated with an increased risk of respiratory infections in clinical trials and might make MS patients on these medications at increased risk of coronavirus complications.   Lemtrada and Mavenclad could also potentially put people with MS at higher risk of serious complications during the year after the last treatment course.  Whether Tecfidera, Vumerity or Tysabri treatment would impact susceptibility to coronavirus complications is unclear.  Teriflunomide is likely low risk for increased complications.  Copaxone and interferons (Avonex, Betaseron, Extavia, Plegridy and Rebif) are likely quite safe as well.  NEVER STOP YOUR MS MEDICATION ON YOUR OWN SINCE COULD LEAD TO PERMANENT SEVERE DISABILITY. ALWAYS CONSULT WITH YOUR HEALTHCARE PROVIDERS BEFORE MAKING TREATMENT DECISIONS.

C. AGE and DISABILITY:   Elderly patients are at greater risk of death.  Overall, the risk of death is estimated at 2-3% of infected COVID-19 patients.  People with MS with higher levels of disability such as with moderate to severe weakness in arms and legs may be more vulnerable to coronavirus complications.

PROTECT YOURSELF:

A.  Avoid close contact with people who are sick.

B.  Avoid touching your eyes, nose, and mouth.

C. Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

D. Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.  The virus can linger for a few days on plastic and steel.

E. Facemasks are not recommended by the CDC for people that are healthy.  N95 masks are effective but generally reserved for healthcare works treating sick coronavirus patients.

F. Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.  If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.

G. Stock up on supplies at home if you are at higher risk for complications.  As infection rates soar, you will be prepared to avoid public places for shopping.

H. Would avoid travel including airplane flights and cruises. Avoid attending group gatherings such as meetings, religious events and sporting events in higher risk areas.

I. Notify your healthcare providers immediately if having fever, cough or shortness of breath.

At ECTRIMS in Stockholm in September 2019,  Dr. Barry Singer was interviewed by Shift.ms about a way to routinely monitor someone’s cognition at regular neurology appointments.  Using an iPad, the rate at which someone processes information (processing speed test) can be measured in just 2 minutes and then immediately compared to people without multiple sclerosis with same age and education background. Approximately half of people with MS had trouble with short-term memory loss, multitasking problems and/or word finding difficulties.  If someone living with MS performs well, great news and continue treatment.  If losing ground on the test, best to review MRI imaging and possibly consider other treatment options.

Treatment adherence (taking your multiple sclerosis medication regularly) can have a direct impact on how well you live with MS.  Not taking medication regularly has been associated with more relapses.   Many obstacles prevent medications from being taken regularly.  People with MS sometimes minimize the severity of the disease, forget to take doses, have needle phobia and/or experience treatment side effects.  Out-of-pocket costs and insurance issues can lead to a lapse in treatment. Partner with your healthcare provider(s) to find solutions to help you stay on path.

Specialty pharmacies are actually collecting data on whether you are refilling your medication regularly.  If you refill on time because your taking your medication as directed, you will have a high medication possession ratio.  As expected, low medication possession ratios on Copaxone and interferons have been associated with more MS relapses.

Educating yourself about MS and keeping long-term goals in mind will help you stick with your treatment plan.  If having side effects or injection site issues, talk to your doctor about ways to potential minimize these issues.  Alternative treatment options can be explored if desired.  Pharmaceutical companies that make the various MS meds can help with co-pay assistance and often provide free medication to uninsured or underinsured individuals if not on Medicare or Medicaid.  Patient assistance programs are available to help with costs for people on government insurance plans.

Critical to living well with MS is exercise.  Finding a regimen matching your abilities is important.  Poor balance and leg weakness an issue?  Try a recumbent stationary bike.  Save some cash and buy someone’s barely-used bike sitting in the basement!   Yoga is great for balance.  MS classes for Yoga can be found in larger cities.  Otherwise, purchase a Yoga video.  Swimming makes balance less of an issue and keeps the body temperature cool for more endurance.  Confined to a wheelchair?  Leg stretches and arm weights can be very effective.

If you have little limitations, go for it.  Some of you are already marathon runners and triathletes!  Keeping a strong as possible is hard work, but the pay off is great over the long term.  Make your plan and stick with it!

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As we start 2011 together, it’s a great time to recommit to helping yourself and those close to you.  Got a plan?   Exercise is a great start!   Sign up for a class, buy a yoga tape, or join a gym.  If your legs are weak, consider a recumbent bike or focus on arms with weights.   The more you do, the stronger you will be.   Shake up your diet, if needed.  Skip the fried food and roll out the fresh fruits and vegetables.  Drink more water and ditch the sweetened soda.  Follow through on stop smoking.

You be the model for your friends and families.  The payoff will be great!