Where to Turn: MS Drugs, Babies and Assistance
Do you know about MotherToBaby or the Assistance Fund? Don’t feel alone if you don’t, because I didn’t either until recently when I attended the annual meeting of the Consortium for MS Centers, a four day event jammed full of seminars, classes, lectures and much more. There was an exhibit area, which was the showcase presentation point for all of the MS pharmaceutical companies, health care delivery businesses and more. The familiar non-profit advocacy groups were there as well, including Accelerated Cure Project (iConquerMS™), Multiple Sclerosis Association of America, CanDo MS, MS Foundation and the National Multiple Sclerosis Society. These groups, along with a few others make up the MS Coalition, organized to leverage limited resources and collaborate with each other.
Among these better known MS organizations were a few lesser known non-profit organizations that I was not familiar with and am especially glad I had the opportunity to learn more about two of them that are associated with MS drugs and can share their information with you.
The first is MothertoBaby, a non-profit group operated out of the University of San Diego. This group focuses on the use of medicines during pregnancy and breastfeeding. They do not limit their interest just to the MS drugs; they are available to talk about any medication questions as they relate to pregnancy. If you or someone you know, has pregnancy related drug questions, they are a unique resource. Mothers to be as well as physicians are encouraged to use their service.
“MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists (OTIS), is dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding.”
OTIS began in 1987 as a group of scientists working toward better understanding birth detects and linking the experts who study this with the public. MotherToBaby was opened in 2013 and both groups are used for information about “medications, chemicals, herbal products, illicit drugs, diseases and much more during pregnancy and while breastfeeding. OTIS and its information service, MotherToBaby, are suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC),”according to their website.
Anyone may use their service, which is available in English and Spanish. They also are tracking people who are pregnant and might have exposure to some of these prescription drugs so those possible side effects might be better understood. Their website contains more information, including how to contact them. (866) 626-6847.
The other non-profit I found at the meeting is The Assistance Fund. Their sole function is to “help under-insured people meet the cost of out-of-pocket expenses for prescription drug copays, genetic testing, and premiums.” I sat with Mark Neidig, Sr., VP of Development and Communications, to find out more about this group.
The Assistance Fund began in 2009, started by two pharmacists who had seen firsthand the escalating cost of prescription drugs. The idea to start the Assistance Fund came while watching a woman turn and walk away from their pharmacy counter because she could not afford the drug copay. They turned their frustration into the Assistance Fund, and has distributed $220 million in patient funds in five years, and has helped people in all 50 states, the District of Columbia, and Puerto Rico, according to Mr. Neidig.
All of the pharmaceutical companies have assistance funds in some form to help patients use their drugs and they are a great starting point but the Assistance Fund takes it a step further – the Assistance Fund makes no restriction and will help with any of the MS disease modifying therapy drugs, regardless of the manufacturer. Mr. Neidig said they support drugs for a number of diseases, and the money donations they receive are often designated for a specific disease, but the donor is not permitted to only support a particular drug.
There is an income requirement to get this assistance, but it is set at 700% of the poverty limit; this means overall income for a family of four would be approximately $100,000, according to Mr. Neidig. He continued to say they recognize the disproportionate cost of these drugs and their support at this level allows families to keep their income and take care of their other needs. He points out that the average claim paid is $4,800, and over time can add up to a very significant number. Participants must have some form of insurance, which can be private or government insurance.
The Assistance Fund helps with challenging medical costs through their copay and financial assistance programs. They also have a premium assistance program to help with the cost of health insurance premiums. Multiple sclerosis is just one of 18 conditions they assist with.
There is an online application process and people available by phone to talk through their services. At the time we talked, they were not accepting new applications for help with MS drugs, but Mr. Neidig was hopeful they would be getting additional support for that area in the near future. They have an open enrollment period in October and once approved, the support is good for the following calendar year.
Wishing you well,
How many specialists did you see before finding "The One"?