Financial assistance for MG patients – Sept 30 2022
Posted by myasthenia
Are medical costs overwhelming you? These programs may provide relief. Click the links to learn about who’s eligible and what each program covers.
Status (open/ waitlisting/ closed) is current as of September 30, 2022:
The Assistance Fund is accepting new enrollments for individuals who have myasthenia gravis. This program helps with out-of-pocket medical costs.
The National Organization for Rare Diseases (NORD)‘s financial assistance program is temporarily waitlisting MG patients. (In other words, get on the waitlist.) NORD helps with the cost of insurance premiums, office visits, medications, and other for myasthenia gravis patients. Click here for waitlisting updates.
The PAN Foundation fund for myasthenia gravis patients is currently closed, but you can sign up to be notified when the program resumes support for MG patients.
Conquer MG’s Patient Assistance Program has supported MG patients since 2014. Medical costs up to $1,000 may be reimbursed if you have an MG diagnosis; live in Illinois, Indiana, or Wisconsin; and have financial need. Applications for 2022 are being accepted.
Other Resources
NeedyMeds is dedicated to helping people who cannot afford medicine or health care costs.
RxAssist offers a database of patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.
The Medical Assistance Tool is a search engine tool sponsored by PhRMA; it can help you find many of the patient assistance resources that the biopharmaceutical industry offers.
MG Activities of Daily Living (MG-ADL) Scale
Posted by myasthenia
With a disease like myasthenia that fluctuates from day to day and even more from month to month, it can be challenging to get a clear picture of a person’s illness. Your doctor can assess your myasthenia with several different tracking tools. One of these measures is called the MG Activities of Daily Living scale, or the MG-ADL.
The MG-ADL scale assesses the impact of MG on your daily functions. Physicians use this tool to score a patient’s MG symptoms based on the patient’s recall of symptoms during the prior week. A person’s score can range from zero (normal) to 24 (most severe).
In January 2022, an Illinois-based specialty pharmaceutical company collaborated on a project with Conquer MG to gain insights from MG patients. Conquer MG helped with study review and recruitment, and a study of 102 MG patients was conducted that addressed their use of pyridostigmine (brand name Mestinon®). Pyridostigmine is typically the first drug MG patients are prescribed. With permission from the specialty pharmaceutical company, we share the following data. This information may be shared, but not reprinted. If Conquer MG members have particular interest in this subject and wish to be connected with the company, email info@myastheniagravis.org and we will make a connection.
Overview
Overall, most of the respondents (81%) reported being “somewhat” to “very” satisfied with the effectiveness of pyridostigmine. However, nearly two-thirds (62%) reported some impact with the drug’s side effects, with 43% reporting at least one “severe” side effect (most often diarrhea/constipation at 25%). Many have had to limit their pyridostigmine dose or have found their quality of life diminished due to the medication.
Those who have mild to moderate symptoms are more likely to be satisfied with the drug’s effectiveness and find the side effects acceptable.
About the respondents
Nearly all respondents reported their MG sub-type; 85% said they have generalized MG, and 15% reported having ocular MG.
All have experience with taking pyridostigmine (77% reported current use).
Within the study group, about 80% of the study group describe MG’s daily impact as “mild” or “moderate.” Eleven percent (11%) reported experiencing a hospitalization for MG in the last 12 months.
Pyridostigmine use
As this bar chart shows, 81% of the group use pyridostigmine daily or intermittently. The average daily does is 3x per day. The most typical dose is one tablet (60 mg). Nearly a quarter (23%) limit or have stopped using the medication because of side effects they experience.
Satisfaction with the medicine
Study participants were asked how satisfied they are with the effectiveness of pyridostigmine, and about the side effects they encounter. The following bar charts show:
23% reported dissatisfaction with pyridostigmine side effects.
81% were somewhat to very satisfied with the effectiveness of pyridostigmine
43% of responders reported at least one “severe” side effect (diarrhea/constipation at 25%)
62% reported “some impact” of pyridostigmine side effects
About 60% of patients take pyridostigmine with food to minimize side effects
Almost half of responders vary pyridostigmine timing based on activities
When asked about the impact of pyridostigmine side effects on daily life, 62% of responders reported some impact. Over one third (35%) reported their activities of daily life (ADL) have been limited, and 30% reported a decrease in quality of life.
Deciding on MG Medications
Side effects are important to MG patients, but so is cost. Among the respondents, 5 out of 6 (83%) chose insurance coverage as an extremely important feature of MG medication. The next most important factors – for 5 of 8 (62% to 65%) – are acceptable side effects, acceptable out-of-pocket costs, and minimal drug interactions.
