Health Insurance

Getting and keeping health insurance coverage through job and life changes can be challenging for people with IC/BPS.

Health Insurance for People Living with IC/BPS

Getting and keeping health insurance coverage through job and life changes can be challenging for people with interstitial cystitis/bladder pain syndrome (IC/BPS). Having a chronic disease like IC/BPS makes you a high risk for an insurance company, so when you don’t have insurance through an employer, coverage can be tricky. But when you have IC/BPS going without health insurance also carries very high health and financial risks. All of the choices you might be able to make are hard ones, but you do have options. Below we lay those options out for you to help you decide what to do and point you to resources for more help and information.

Most Americans who have health insurance have benefits through an employer, and most who lose coverage do so because of employment changes: getting laid off or fired, not being able to work enough hours to continue to qualify for your employer’s benefits, or similar changes for the spouse who carried the coverage. At this time, the choices with the national health insurance programs are still limited for people with IC/BPS.

Hang Onto Your Employer’s Coverage: COBRA Continuation

The health benefit provisions of the Consolidated Omnibus Budget Reconciliation Act (COBRA) are what make it possible for you to keep your employer’s health benefits temporarily if you lose your coverage because of certain specific events. (This applies to employers who have 20 or more employees on at least 50 percent of their business days.) For you and your plan, those events are generally a reduction in your hours or voluntary or involuntary termination of employment for reasons other than gross misconduct. For your coverage under a spouse’s plan, those events include termination and reduction in hours as well as your spouse becoming qualified for Medicare, death, or divorce or legal separation. You have 60 days from the time that your employer notifies your plan of the event (which usually occurs right away) to choose continuing coverage.

Usually, with COBRA continuation, your employer won’t be contributing part of your premium, so you’ll be paying much more for health insurance than you did as an employee. In fact, the employer may charge you 102 percent of the premium that they have to pay on your behalf. That amount may be a financial shock, but the insurance is still group insurance. And what you pay for group insurance will be lower than comparable coverage under an individual plan. In fact, it may be lower than even a bare-bones individual policy. In addition, you often won’t qualify for policies with many insurers because you have a chronic condition—IC./BPS

The continuation in coverage COBRA requires can extend to a maximum of 18 months, unless there is another “qualifying event.” For example, if you elect continuation because you reduce your hours below what your employer requires for coverage and then you get laid off, the layoff is a second qualifying event. One other qualifying event is a very important one for IC patients, and that is a Social Security Administration (SSA) determination of disability (SSDI). With an extension of COBRA coverage, you may feel another financial shock because, with this kind of continuation, health plans can charge you 150 percent of the premium amount that they pay. Nevertheless, that may still be less expensive than individual coverage.

Switch to Your Spouse’s Insurance

Health insurance is so difficult to afford when it’s not employer based that the situation has become TV sitcom fodder. Desperate Housewives’ Susan Meyer remarried her ex-husband just to get the health insurance. If you lose your health insurance benefits, find out if your spouse has a family plan option and how to sign up.

Get Another Job with Health Insurance Benefits

But a step not quite so desperate as marrying for the health insurance is finding another full-time job with benefits that you can do despite your IC/BPS, if you are well enough that you don’t meet SSA disability requirements (SSDI). If you can’t work full time, an option is to work part time for an employer that offers health benefits to part time, contract, or temporary employees.

Some of the well-known national employers that provide healthcare and other benefits to their part-time employees are Starbucks, IKEA, Costco, and The Container Store. One way you can find employers that offer these benefits is to check “best companies to work for” lists that are national or local and then see if companies on those lists in your area offer healthcare benefits for nonstandard workers. Fortune’s annual list is probably the best known. Other organizations and publications also have lists, such as Working Mother, the AARP, Forbes, the Great Place to Work Institute, and CAREERS & the disABLED magazine.

See if You Qualify for Medicare or Social Security Disability

IC/BPS can be debilitating enough to keep you from being able to work and can qualify you for an SSA determination of disability. Thanks to ICA advocacy, SSA made an official policy interpretation ruling for IC in November 2002. That is official SSA recognition that IC may qualify you for disability, and that ruling’s guidance is binding on SSA adjudicators in processing IC/BPS disability claims. Contact the ICA to obtain helpful information about applying for an SSA disability determination. If you get the disability determination, you automatically qualify for Medicare, but the coverage doesn’t start until two years after your determination is made.

That’s why, if you are leaving work because your IC/BPS keeps you from being able to be on the job or put in the hours, you need to apply for SSA disability right away! If you do, you can extend COBRA coverage for an additional 11 months beyond the 18-month maximum, but you must meet two requirements. First, you must get a ruling from SSA that you became disabled within 60 days of your COBRA continuation. That’s not likely a problem if you have to leave work because of your IC/BPS. Second, you must notify your plan of that SSA disability determination within 60 days of getting it and before the 18 months of COBRA continuation are over. In total, COBRA may then extend for 29 months-and that leaves you very little wiggle room to get your SSA determination and COBRA continuation in order to prevent a gap before you get Medicare coverage. So, the message is don’t delay!

Buy Into a Group Plan

If you are a contractor, that is, a freelance worker, you may be able to purchase a group plan on your own in some states. In others, you must have employees to do so. However, you may be able to purchase a group plan through an association that you join, such as a local small-business association or professional association. For association-type plans, you don’t necessarily have to be employed, but you do have to meet the association’s criteria for membership to qualify for the plan. Be sure to ask, however, whether the insurance is a group plan so that Health Insurance Portability and Accountability Act (HIPAA) rules for group plans will apply. Some associations offer health insurance plans through the organization, but the plan available to you may be an individual one.

An advantage of being in a group plan is not just the generally lower cost. Plans such as these can help you avoid restrictions for pre-existing conditions, such as IC/BPS. That’s thanks to HIPAA. For example, if you have had “creditable” health insurance for 12 straight months and no lapse in coverage of 63 days or more, the group plan you join must cover your care for your pre-existing condition right away. “Creditable” includes other group or government employee health plans, Medicare or Medicaid, and state high-risk pools. (See “Buy Into a State High-Risk Pool” below.) HIPAA’s rules apply to every employer group health plan with at least two participants who are current employees, including plans for companies that are self insured. Some states apply the rule to “groups” of one, a boon for the self employed.

Buy an Individual Plan

It can be extremely difficult to buy an individual insurance plan when you have a chronic disease, and if you can find one that will accept you, the premiums will likely be very high. That’s because individual plans don’t have to play by HIPAA rules, so they can deny you coverage because of your chronic disease, exclude coverage of your IC as a pre-existing condition, or ask you to pay an extremely high premium.

Individual plans are not out of the question, however, if you look for one, it can be a wise move to use an insurance broker instead of applying yourself. Your IC, like any chronic illness, can be a reason for many companies to deny you coverage. And once you have been turned down for insurance by one company, other companies are very likely to turn you down, too. In fact, a question about whether you have been turned down for insurance is part of nearly every insurance application. An insurance broker can help you avoid that. He or she will usually know which companies will accept patients with a pre-existing condition if it is well managed. A broker may also know which companies give the best service, for example, those that don’t hassle you on every claim or raise premiums frequently.

Numerous types of individual plans are available, but evaluate them carefully. Short-term coverage, which can be a lower-cost option, may be a possibility if you are between jobs. HMO and PPO plans are generally less expensive than traditional insurance, but for all of those, you may have to choose a high-deductible plan to make the premium affordable. More companies such as Sam’s Club and Costco (in California) are jumping into the individual insurance market because so many people don’t have coverage through employers or are between jobs, but those plans may also have the same limitations for pre-existing conditions and limitations on coverage.

Another option is a high-deductible plan with a health savings account, but you need to be sure you can front the deductible if you need care before you have enough in the account to pay it. Be aware that these types of plans are also subject to the same restrictions as other individual plans, such as for pre-existing conditions, and lifetime maximum payments may be lower than with other plans. Medical discount programs are also available, but beware. These are not traditional insurance and do not pay for any care. Instead, you pay somewhat reduced fees to certain providers who have agreed to take them. The Federal Trade Commission has warned consumers that, although some plans provide legitimate discounts, many offer very little for your money, and some claim they provide big discounts from numerous providers for doctor visits, hospital stays, and drugs but then don’t make good on the claims.

Be careful: Whether you purchase an individual or a group plan, be sure to check out the policy, the insurance company, and the broker very carefully. You need to go over any insurance policy with a fine-toothed comb for such hurdles as pre-existing condition restrictions, deductibles, copayment levels, and lifetime maximum payments, and you need to check that the broker is licensed and reputable. If you are able to get a group plan, keep in mind that even group plans are not automatically comprehensive enough to protect you financially. You need to examine a group plan as carefully as you would an individual plan.

For now, state rules govern health insurance policies and states license brokers, so you should check with your state health insurance department on their requirements. State insurance departments often have information to guide you on buying insurance and have consumer alerts about companies and brokers. They can tell you whether the broker you’re considering is licensed in your state. The National Association of Insurance Commissioners has listings of all state insurance departments as well as a web page you can use to see if any consumer complaints have been lodged against an insurance company. You can also check out potential brokers with the National Association of Health Underwriters, which requires its members to adhere to a standard of ethics. Also, the National Committee for Quality Assurance has quality ratings of insurance companies.

Buy Into a State High-Risk Pool

If you can’t get into a good group plan and you don’t qualify for most individual insurance because of illness, a state high-risk pool is an option to keep you covered. The majority of states have them, with their requirements and affordability varying widely. Generally, they are more affordable for someone with a chronic illness than policies on the individual market.

By law, the premiums do have caps. Those range from a low of 125 percent of the average comparable premium for your state up to 200 percent or more, although most states’ average cap is 150 percent, according to the National Association of State Comprehensive Health Insurance Plans. In some states, premiums reach heights that exclude many from the pool. A few states offer subsidies to help low-income people with their premiums. Most of these insurances, too, have waiting periods for coverage, similar to private insurance, unless you have been in a group plan and HIPAA rules apply.

Many states that do not have high-risk pools have guaranteed issuance policies. Some require all individual insurers to accept enrollees or HIPAA eligible enrollees. Some require certain insurers, such as Blue Cross, or certain types of insurers, such as large insurers, nonprofits, or HMOs, to accept enrollees either at any time or during an “open enrollment” period. Those insurance companies can also charge higher premiums for sicker patients, depending on the state.

Some states, however, put caps on premium prices, some states prohibit price variation based on health status altogether, and some limit how much insurers can vary prices based on health status. But until the federal government or your state addresses these problems, be sure to consider your options carefully. You will need to weigh the risks of going without health insurance or with insurance that may not cover what you need against the potential costs. And when you do look for insurance, read the fine print! In other words, look very carefully at what the policy covers and whether it covers enough.

Learn More

Here’s a list of some additional online information