Life with MS

Gaps Remain Despite ACA Legislation

It is said a lot, but multiple sclerosis is unpredictable. The disease causes symptoms that may change from day to day, but that may also change or worsen over longer periods of time. For these reasons and others, treatment can be complicated, individualized, and unfortunately, expensive.

A 2015 study found that MS treatment can cost $60,000 or more annually. Healthcare costs that high can be a serious burden, even for those with health insurance. For those facing MS without insurance, getting proper medical care can seem impossible. There has been some good news in recent years, though. In 2014, with the passing of the Affordable Care Act, many beneficial changes affecting medical insurance were enacted.
The ACA helped lift millions out of medical distress, with people below or near the poverty line receiving the most benefit from the legislation. In 2013, before the ACA went into effect, more than 44 million nonelderly Americans were without health insurance. By the end of 2016, that number had fallen considerably, to less than 28 million. As insurance rates rose, people saw improvements in their ability to pay for prescriptions and care.

Despite providing much needed health benefits, the ACA didn’t solve all the problems that were built into the healthcare system. There are two major problems still hurting people who need healthcare. One of them remains uninsurance, while the other is under-insurance.

Addressing the Needs of the Uninsured

Because of the ACA, many of those who didn’t have insurance became eligible to receive it through either Medicaid expansion or the newly established Health Insurance Marketplace. A study found that those who remained vulnerable were low-income families. In spite of the ACA’s creation of a Health Insurance Marketplace, and its efforts to expand Medicaid, tens of millions of people remain uninsured for a variety of reasons:

  • Cost – If you do not qualify for free or subsidized coverage, the required costs, such as monthly premiums or out-of-pocket expenses, could be too high for you to reasonably afford.
  • Confusion – The current insurance system is complex, constantly in flux, and can be incredibly confusing to navigate. This means that some people who may be eligible for certain benefits are simply unaware of their options.
  • Circumstances – As your personal circumstances change, your insurance coverage may, as well. Marriage, divorce, job change or loss, the birth of children, or the death of a family member are just a few of the situations that could affect your insurance status.
  • Employer – Not all jobs provide access to healthcare coverage. Part-time employees are not typically eligible for benefits, and very small businesses are not required to provide insurance, even for full-time employees. In other cases, the quality or coverage of employer-provided healthcare may not meet your needs.
  • Falling through the cracks – Millions of people earn too much to qualify for Medicaid, but not enough to afford to purchase coverage through the Marketplace.

The consequences of not having medical insurance can be dire, especially for someone with MS. A lack of insurance means preventable conditions, minor injuries, and chronic diseases go undetected or untreated, leading to worsening health and quality-of-life. People often postpone or forego needed prescriptions because of high costs. This is sometimes called a “medication vacation” and can lead to more disease activity and progression. They are also likely to receive fewer diagnostic and therapeutic services when hospitalized, and frequently must pay higher rates for the services they do receive, which can lead to serious financial trouble because of medical debts.

Underinsurance and MS

In short, underinsurance is when someone has medical insurance, but has trouble covering the costs of care, medications, or both. This is often the result of insurance plans that only offer minimum coverage and carry high deductibles. For those with Medicare drug coverage, they may experience the coverage gap referred to as the “donut hole,” when the plan places a temporary limit on what will be paid for drugs. When someone is underinsured, and faces a chronic illness such as MS, they are frequently forced to spend a high portion of their earnings on medical care.
Studies have shown that nearly half of those who are underinsured have exhausted their savings to pay their medical bills. People in that situation typically have lower credit ratings and are likely to file for bankruptcy because of their medical bills – even though they had insurance when their illness began.
And, just like the uninsured, people who are underinsured are very likely to put off care because of high out-of-pocket costs; skip recommended treatments and tests; and frequently won’t fill prescriptions or will skip medication doses. A study found that the underinsured tend to be older, sicker, and use the healthcare system more often. They were also more likely to have a chronic health condition.

Help is Available

Given that MS is an unpredictable chronic illness that can result in giving up employment, and comes with high medical expenses, it is frequently true that people with MS are either uninsured or underinsured. Thankfully, there are assistance programs that can aid people who are struggling to bridge the gap between inadequate medical coverage and their bills.
Take the time to review these resources, and learn what is available to you if you are facing uninsurance or underinsurance.

General Assistance Programs

The National Library of Medicine and National Institute of Health is a great "one-stop shop" site that provides links for Medicaid, children's health assistance programs, disease-specific assistance, and more.
The “Affiliate Search” at Mental Health America can help you find treatment, support groups, and a host of other resources available to low income individuals or individuals with no health insurance who find themselves in need of counseling or support.
The Health Resources and Services Administration provides a link to help you find a community health center in your area. Community health centers can frequently help address physical and mental health issues.
The National Association of Free Clinics provides a list of free clinics throughout the United States.
Patient Systems Inc. provides financial support and guidance for qualified patients with specific, rare chronic diseases. If you do not see an assistance program for your diagnosis, complete the assistance request form.
•  Needy Meds is a nonprofit organization which provides resources for those who cannot afford medical care or prescriptions. Their website provides links to SCHIP, Medicaid, patient advocacy groups and other programs.
Patient Assistance Programs
National Conference of State Legislatures many states offer a discount drug program. To find out what types of programs your state offers, you will have to scroll down the page. There are also a number of private organizations that offer assistance with paying for medications.
RxHope offers a helping hand to people in need by assisting with obtaining critical medications.
Partnership for Prescription Assistance is to out to increase awareness of patient assistance programs and boost enrollment of eligible individuals. They offer a single point of access to more than 475 public and private programs, including about 200 programs offered by biopharmaceutical companies. They’ve helped millions of Americans to get prescription drugs for free or at very low cost.
FamilyWize is a nonprofit organization that provides free prescription discount cards. The cards can be used by those with no health insurance, and for those with healthcare coverage during deductible.

Copay Assistance

HealthWell Foundation is a nonprofit organization that assists the underinsured who are unable to afford their copayments.
Patient Advocate Foundation Co-Pay Relief provides financial assistance for those who meet certain medical and financial qualifications.
Chronic Disease Fund is a nonprofit organization which provides financial assistance to those with chronic illnesses.
Following is a list of medication assistance programs specifically for MS patients:

Aubagio MS One to One - 855-676-6326
Aubagio Co-Pay Program
Avonex Above MS™ Program - 800-456-2255
BETAPLUS® Betaseron Patient Assistance Program - 844-788-1470
Shared Solutions® Copaxone Patient Assistance Program - 800-887-8100
Novartis Patient Assistance Foundation, Inc. - Extavia, Gilenya, Glatopa - 800-277-2254
Lemtrada Co-Pay Program - 855-676-6326
MS LifeLines Rebif - 877-447-3243
Ocrevus Access Solutions - 866-422-2377
AboveMS™ Plegridy - 800-456-2255
AboveMS™ Tecifdera - 800-456-225
AboveMS™ Tysabri - 800-456-2255