By Stephanie Fajuri, Supervising Attorney,

Cancer Legal Resource Center

When thinking about serious illnesses, we often think about only the medical side of things: prevention, screening, treatment, and side effects. However, serious illnesses like Cushing’s syndrome can take a toll on many aspects of a patient’s life. Organizations like the Cancer Legal Resource Center believe that it should not take a lawyer to access health care or preserve one’s job, and that having knowledge of legal rights empowers patients to enforce those rights themselves. As a result, health and quality of life outcomes improve.

Having a little bit of knowledge about common legal issues faced by those with a serious illness can go a long way in preventing significant legal or financial difficulties down the road! Here are a few common questions that patients with serious illnesses have:

Q. Can my employer refuse to offer me health insurance because I have a serious illness?

A. No. First of all, under the Americans with Disabilities Act (ADA), employers are not allowed to discriminate against someone based on their disability, including discrimination about employee benefits. If you have a physical (or mental) impairment that substantially limits a major life activity, as Cushing’s syndrome often does, you might be eligible for protection under the ADA. Second of all, if you get diagnosed once you’re already on your employer’s health plan, the Health Insurance Portability and Accountability Act (HIPAA) requires group health plans to provide guaranteed renewed coverage, regardless of whether the person on the health plan develops a serious or expensive illness.

Q. Can my employer’s health plan make me wait for coverage because I have a pre-existing condition?

A. No, though there might still be a waiting period when you start a new job. Employers are still allowed to make you wait up to 90 days when you start a new job for your health insurance to become effective. However, if employers do choose to impose a waiting period, they have to do so for anyone signing up for coverage. Group plans are no longer allowed to impose pre-existing condition exclusion periods, or periods of time where they would have previously been able to opt out of covering a pre-existing condition. So, if you’re changing jobs, count on needing other coverage for up to the first 90 days at a new job, regardless of whether you have a pre-existing condition.

Q. If I try to buy insurance on my own, can I be turned down for health insurance coverage or charged more for coverage because I have a pre-existing condition?

A. No. In the past, insurance companies were allowed to discriminate based on pre-existing conditions. The Affordable Care Act (ACA) has changed that. As of January 1, 2014, insurance companies are no longer allowed to charge people more for health insurance coverage based on having a pre-existing condition, and they are also not allowed to turn patients down for coverage altogether just because they have a pre-existing condition. In fact, insurance companies are not even allowed to ask any questions about your medical history. When you apply for coverage, they can only ask you for information about your age, where you live, maybe about your tobacco use (depending on what state you live in), and whether the plan is for yourself alone or for your family members.

Q. Where do I buy insurance? Do I have to use a broker?

A. Not necessarily. The ACA created new health insurance marketplaces that make it easier to purchase insurance coverage, because you can compare different plans all on the same website. Additionally, purchasing coverage through healthcare.gov or through your state’s health insurance marketplace means that if your income is under a certain level (400% of the federal poverty line, or for 2016 about $47,080 for an individual, or $97,000 for a family of four), you might be eligible for tax credits that would make your monthly insurance premiums less expensive. To see what your options are, visit healthcare.gov. Important note: if you are eligible for Medicare or Medicaid, you will not be able to receive these premium tax credits.

Q. What if I can’t afford to buy insurance, and I’m not working somewhere that offers insurance?

A. Depending on what state you live in, you might be eligible for Medicaid. The ACA made some pretty big changes to Medicaid in states that have decided to expand their Medicaid programs. In those states, you might be eligible for Medicaid based on your income alone, instead of needing to be “disabled” according to the Social Security Administration. If your household income is less than 138% of the Federal Poverty Line (in 2016, that’s $16,394 for an individual, or $33,534 for a family of four), you might qualify for health care coverage through your state’s Medicaid program, regardless of how much you have by way of assets. Check healthcare.gov for more information about whether your state has expanded its Medicaid program.

Q. Can’t I just sign up for Medicare instead of buying insurance?

A. Medicare is the federal health coverage program that is primarily available to people 65 and older. Most people have to wait until they turn 65 to qualify for Medicare, unless they have some very specific health conditions like End Stage Renal Disease, or if they have been receiving Social Security Disability Insurance (SSDI) benefits for at least 2 years. Unfortunately, if you are receiving SSDI, there is no way to expedite your Medicare eligibility.

Q.: If I develop a serious illness while I’m working, can my employer fire me?

A. No. As stated above, the Americans with Disabilities Act (ADA) provides protection against discrimination based on disability. People with serious illnesses, like Cushing’s syndrome, might be eligible for protection under the ADA if they have a mental or physical impairment that substantially limits a major life activity. If you have a disability according to that definition, you are entitled to something called “reasonable accommodations,” which are changes to the work environment that allow you to continue to do your job, as long as the changes aren’t an undue hardship to your employer. For example, if you need some flexibility with your schedule so that you can attend more doctor appointments, that might be considered a reasonable accommodation. It’s important to keep in mind that what is reasonable for one person in one position might not be reasonable for someone else, so reasonable accommodations are looked at on a case by case basis.

Q. What if I’m so sick that I can’t work at all and need time off?

A. You might be entitled to take unpaid job-protected time off under the Family and Medical Leave Act (FMLA). FMLA provides up to 12 weeks of job and health benefit protected leave for qualified employees. In order to be eligible for FMLA leave, you have to work at a large employer (at least 50 employees within a 75 mile radius of where you live), you must have worked for that employer for at least a year, and you have to have worked for at least 1250 hours in the last year. Additionally, during FMLA leave, your employer is required to maintain your health benefits (although you are still responsible for your share of your premiums). Unfortunately, employers are not required to provide unlimited time off to sick employees, so it’s important to know what your rights are. Some employers are more generous with leave time. Other smaller employers who are not covered by FMLA might have more restrictive medical leave policies.

Q. How will I keep paying my bills if I have to take unpaid leave?

A. First, check to see whether you can use any other accrued paid time off while you’re on medical leave. If you’ve used that up, you might also want to see whether your employer has a policy that allows other employees to donate time to sick employees. Alternatively, if you have a short term disability policy through work or that you purchased on your own, or if you live in a state that has state disability insurance, you might be able to get a portion of your income replaced (usually somewhere between 55%-70%) while you’re on medical leave.

Q. What if I’m so sick that I can’t go back to work at all?

A. If your serious illness has gotten bad enough that you are not able to continue working or need much longer than 12 weeks off of work, you might need to look at long term disability insurance. If you didn’t purchase a private plan or sign up at work before you got sick, it’s probably too late for you to sign up for a private plan now. However, if you’ve been paying into Social Security for at least 5 out of the last 10 years and your serious illness is expected to keep you from working for at least 1 year, you might be eligible for Social Security Disability Insurance. If, on the other hand, your serious illness is expected to keep you from working for at least a year and you have extremely low income and assets, you might be eligible for Supplemental Security Income. For more information about these programs, check out the Disability and Assistance section of the CSRF website.

Q. What happens to my insurance if I have to leave my job?

A. Depending on the size of your employer, you might be eligible for COBRA. If you lose or leave your job, you have 60 days to either opt into COBRA coverage, or you have a 60 day special enrollment period to purchase new insurance through your state’s marketplace. COBRA is a law that allows you to stay on the same health insurance plan that you had while you were working for 18 months, with the only change being that you become responsible for paying the full amount of the premiums. COBRA is available to employers with 20 or more people on the group health plan. If you work for a smaller company, your state might have a “mini-COBRA” law that might apply to you. COBRA premiums are often unaffordable; however, the ACA’s health insurance exchanges offer an alternative, possibly more affordable, option for insurance coverage. By Stephanie Fajuri, Winter, 2016

Editor’s Note: Stephanie Fajuri is the Supervising Attorney of the Disability Rights Legal Center’s Cancer Legal Resource Center (CLRC) in Los Angeles, California. Ms. Fajuri is a member of the American Bar Association’s Breast Cancer Advocacy Task Force, and recently completed the Women’s Policy Institute, a leadership and public policy training program sponsored by the Women’s Foundation of California. Ms. Fajuri earned her J.D. at Chicago-Kent College of Law, and her B.A. in History at the University of Michigan- Ann Arbor. She is a member of the State Bars of California and New York. The Cancer Legal Resource Center provides free information and resources to people with cancer-related legal questions. For more information, visit www.cancerlegalresources.org or call 866-843-2572.