Private Insurance for ALS
Most Americans receive health-care coverage from private insurance companies. Employers offer private plans to their employees at discounted rates. Individuals can purchase plans on their own directly from insurance companies, but it is usually more expensive.
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Unfortunately, if you have to stop working due to ALS, you and your family may lose your discounted employer-based coverage. The good news is that you can apply for Medicare, which would become your primary insurance. However, Medicare would only cover you, so your family members may need to purchase their own insurance.

Are you still working?

If so, visit our employment page to learn more about your health insurance options.
If you and/or your family members need to purchase private health insurance, this page explains some of the basics. Navigating the health insurance maze can be challenging, but it is well worth doing your homework and finding the best plan for you.

Who can buy private insurance?

Anyone can buy private health insurance, unless you already have coverage through Medicaid. Since the passage of the Affordable Care Act, you cannot be excluded due to a pre-existing condition like ALS, nor can you be charged more because of your health condition. However, monthly premiums can be expensive. Learn how to enroll.​

How much will it cost?

There is no one answer to this question. Plans, costs, coverage, and options vary by state and other factors. Again, employer-based insurance is less expensive than buying it on your own.

Every year, plan prices and benefits usually change. Review your current plan and explore alternatives during your open enrollment period, which is the only time of year you can change plans.

Should I get health insurance?

It is probably in your best interest to have some type of health insurance, especially if you have ALS. Health insurance, although expensive, should help reduce your out-of-pocket costs over time.

If you or your family cannot afford private health insurance, you may be able to qualify for Medicaid, which is a federal health insurance assistance program for low-income families.

What should I look for in a plan?

Private insurance plans vary widely. With so many variables, it is very important to understand how insurance works so that you can shop around and pick the best plan for you.

Here are some of the most important factors to consider:

  • Monthly premium: How much will you need to pay each month just to have insurance?
 
  • Deductible: How much will you have to pay out of pocket before insurance starts paying?
 
  • Benefits: What types of care will be covered and at what rates? With ALS, inquiring about durable medical equipment (DME) benefits is especially important. For example, is there an annual maximum on DME?
 
  • Co-pay: How much will you be expected to pay at a minimum for each doctor’s visit?
 
  • Out-of-pocket maximum (or limit): In a worst-case scenario, what is the most you would have to pay in one year?
 
  • HMO or PPO: Which type of plan is it? HMO plans are generally less expensive, but you can only visit the doctors on the plan’s in-network list. You also need a referral from your primary care doctor any time you want to see a specialist. PPO plans provide greater flexibility, allowing you to see a wider range of specialists without needing a referral.
 
  • Networks: Are my current doctors in the plan’s network? Each plan will have a list of the doctors included in its network. With PPOs, you will usually have to pay more to see an out-of-network doctor, but will receive some help. HMOs may not reimburse you at all for out-of-network visits.
 
  • Prescription benefits: Will this plan help pay for the specific drugs I need?

  • High-deductible plans: Do I want a higher premium, or higher deductible? High-deductible plans charge you less up front, but you will have to pay more for services until insurance starts helping out. High-deductible plans allow you to set up an HSA (health savings account) so you can pay your medical expenses with your pre-tax income.

Where can I buy private insurance?

Regardless of where you live, your best first step is to visit www.healthcare.gov.

Start by entering your zip code. If your state has its own online marketplace under Obamacare, you will be redirected to your state’s marketplace, where you can shop and compare plans. If your state didn’t create its own marketplace, you will shop for plans directly on the healthcare.gov website.

Here are some other ways to get insurance:

  • Call the Marketplace Call Center at 1​-800-318-2596 to ask questions, compare plans, and get help with applications. Available 24 hours, every day, except certain holidays.
  • Use the government’s Plan Finder website to find plans available in your area. You can then contact insurance companies directly.
  • Find local help from trained people (agents, brokers, and others) in your community—at no cost. They can help you compare plans and help with your application. They may even be able to meet with you in person. Just plug in your zip code to get a list.
  • Find an online health insurance seller that lets you compare plans from a variety of companies before selecting one and enrolling.​

How will I know which plan is best for me?

After researching the options in your area, weigh all the variables and try to predict what your expenses might be for the upcoming year.

​You can always talk with the social worker at your ALS clinic or local ALS organization for guidance. You may also want to try meeting with an agent or broker in your area.

What if I still have questions?

Then you are not alone. Health insurance is complicated. Here are two videos that try to explain things in easy-to-understand cartoons.
Learn more about Medicare and Medicaid.