Taming the Health Insurance Beast: A Step-by-Step Guide for Women Navigating Coverage, Costs, and Care for their Cancer Diagnosis
Health insurance can feel like an overwhelming beast—especially for women facing illness while balancing the realities of coverage, costs, and care. Too often, critical benefits remain hidden in fine print, leaving women underutilizing the coverage they already have. In When Women Get Sick, patient advocate and workplace benefits expert Rebecca Bloom breaks down how to research, ask the right questions, and take proactive steps to maximize health coverage. From staying on an employer’s group plan to exploring individual options through Healthcare.gov, Bloom offers practical advice that helps women cut through complexity, reduce financial stress, and secure the care they need. The guide below is excerpted with permission from her book.
Do the Research, Get Advice
Often, women have better coverage than they think they have. It might take some research and effort to figure out what is covered, but when a woman faces illness, it can be worth her time. This is an excellent thing to hand off to a “chief of staff” and let her help you, because one thing is for certain: insurers do not chase women down to tell them about the benefits they’re missing out on. Employers are not in the business of letting employees know the ins and outs of their health insurance plans. Even the best human resources departments put most of their energy and effort into finding comprehensive plans for their employees at different price points. Some may help employees troubleshoot when things go wrong, but few, if any, will proactively urge employees to take advantage of all aspects of the coverage. For these reasons, I always suggest that women take another look at their Summary Plan Descriptions, which are descriptions in plain English available for all health insurance plans.
It is hardly a revelation that the costs of health insurance and uncertainty around coverage are major stressors to Americans. At least two-thirds report cost as a significant worry.1 Women and Latinx Americans are most affected by stress brought on because of rising costs and lack of access to healthcare. Fifty-seven percent of all “cost desperate” Ameri- cans, meaning people who say that healthcare costs are a daily source of stress, are women. Exacerbating an already untenable situation is the fact that 48 percent of all cost desperate Americans have three or more chronic conditions.2 What this translates to is that large numbers of women who are unwell feel insecure about health expenses and health coverage. It is not an exaggeration to say that this has become both a cultural and economic beast. I have found as an advocate that the best way to help women think all of this through is methodically, because the complexity requires a step-by-step approach to analyzing available options.
Option 1: Seek Out or Keep Group Health Insurance
Group health insurance is always the starting point, because if a woman facing an illness has a group health insurance policy through her employer or a partner or spouse’s employer, keeping it through a health journey is usually optimal. Staying on a group plan allows a woman to keep her doctors and man- age expectations and stress effectively in most instances. She knows what the costs and patterns are and she will have less paperwork to worry about at a time when personal administrative tasks are at an all-time high. Group plans have more buying power with providers and increased leverage. Because they tend to have large numbers of members, group plans are less likely to be dropped by the hospital or healthcare system. For all of these reasons, I counsel women who are on a group plan to talk to human resources at their employers (or spouse or partner’s employer) about staying on the plan for as long as possible through paid and unpaid leaves and disability peri- ods. While no illness is stress free and no insurance coverage guarantees a perfectly smooth experience, I have seen many women’s journeys on group health insurance go well with the right combination of forethought and advocacy.
Before the ACA was passed in 2008, people often were forced to extreme creative measures for staying on group plans, like finding a low-paying part-time job that hovered just over twenty hours a week during debilitating treatment. As I will go into at the end of this book, the rules that pro- hibit insurers from barring people from coverage because of preexisting conditions applied only to group insurance plans prior to the passage of the ACA, not individual ones, making individual ones nearly impossible to affordably procure after a diagnosis. In California, for example, the only way it worked for women I counseled was to go into a “waiting period” for a plan called MRMIP (Major Risk Medical Insurance Plan). This cost a fortune and delayed women from getting treatments they needed, adding appreciably to the already considerable stress of illness.
Since the passage and subsequent phase-in of the ACA, the biggest improvement has been more open access to coverage for people with preexisting conditions at the same prices that everyone else pays. Women may be less attached to staying on their group plans at all costs, though as mentioned, there are still reasons to try for that result.
Option 2: Purchase an Individual Health Plan
When it comes to finding an individual insurance plan, the place to start is healthcare.gov, which will take you directly to your state marketplace, where you can find information about available plans, financial aid options, levels of coverage, and more. If you find it confusing or want to get advice, you can always enlist the help of a broker or go directly to insurance companies, but as a database, this is still the best place to begin to educate yourself. Women can take certain steps to optimize this process for themselves if they must shop for insurance mid-illness.
TIPS AND TAKEAWAYS
Maximizing Health Coverage
What is your plan, if you have one? The first step is understanding what your plan does and doesn’t cover. For example, some newer procedures will be things you may have to fight for. Insurers are always slow to consider them “reasonable and customary.”
Are the doctors you want to use in-network? This can make a huge difference depending on the terms of your plan. Do you want or need second opinions? If you do, it can make sense to pay for doctors out-of-pocket, because money spent on someone’s brains and experience, as opposed to devices, medications, and procedures, is money well spent. So, if a renowned expert in the field is not on your plan but you can get an appointment for a consult, take it and pay for it. Do you know what your plans’ copayments, deductibles, and caps are? This often trips people up. Copayments are cost-sharing for services. They are usually fixed. Deductibles are bigger sums that must be spent by the patient before full coverage kicks in and caps are large dollar figures that insurers will not reimburse beyond. In other words, they get you coming and going.
Have you checked to see if the specialists on your case — anesthesiologists, radiologists, et cetera — are covered to the same extent as your surgeon or oncologist? Remember to ask about all members of your care team, because otherwise you can end up with a bill you did not foresee.
Always call your insurance company with questions.
If you do not understand your Explanation of Benefits, codes or words used, or bills sent.
Ask for and read the Summary Plan Description of your plan.
Use covered preventive services.
They are usually no-cost and not subject to deductibles if they are in-network.
If you are worried about affording insurance or care, be proactive. Ask about payment plans, community resources such as disease-specific emergency funds, and premium assistance. Don’t put off care or go uninsured.
Buying your Own Policy
Think of health insurance as the key to opening the door to the care that you need, not a status symbol or measure of your self-worth.
Don’t assume that the cheapest or most expensive option is best. Always match a plan to the doctors and healthcare systems you intend to interact with frequently.
Take a look at where you are in your treatment and health journey. If a clinic or an HMO has good facilities and personnel, and you are at the point in your treatment
where important decisions about your care have already been made, you may find that a more modestly priced policy is a smart choice for you. If things change, you can always choose another plan at the next open enrollment period.
Here are the essentials to look for in every plan:
Preventive and wellness services
Chronic disease management
Ambulatory or outpatient services
Emergency services and hospitalization
Laboratory services
Pregnancy, maternity, and newborn care
Mental health and substance abuse treatment
Pediatric services, including pediatric dental and vision
Prescription drugs, including brand-name and generic medications
Rehabilitative, habilitative services, and medical devices
You may want to consider a supplemental insurance policy to cover gaps or out-of-pocket costs if you anticipate travel expenses or high copayments.
Look into financial assistance for a state exchange/market- place plan. Healthcare.gov provides premium estimates, and if your income is at or below 250 percent of the federal poverty level guidelines, you could quality for reduced cost-sharing.
When you look at your coverage options in your state marketplace, consider your current medical needs and family medical history. Consider the following:
How much would you spend on medications you are currently taking?
What is your current household income? Are there any anticipated changes?
How much can you afford to pay for out-of-pocket medical expenses?
What are the deductible amounts that would need to be paid before your coverage kicks in?
What is the plan’s out-of-pocket maximum? After you reach your plan’s established out-of-pocket max- imum, every plan will pay 100 percent of the plan’s negotiated amount for covered medical care.
Be careful with short-term health insurance plans. They are not required to cover preexisting conditions. People think they are affordable temporary coverage. They can come in handy when someone is between jobs and the premiums are cheaper. However, some of these plans do not include pre- scription benefits, mental health services, preventive screening, or even hospitalization. Some states have limited the sales of these plans.
When you’re choosing between marketplace plans, call and ask if your preferred providers are in-network and if your medicines are on the plan’s formulary (the list of medications they cover). This information is not always up-to-date online.
Get help from an assister or a healthcare navigator for free. If you look at healthcare.gov/localhelp, you will find your way. These helpers are paid by the government to give you the information you need to make the best choices.
Stay away from unofficial, odd-looking websites and online ads. Scammers are looking to capture your data and sell you policies that may not be optimal or comprehensive. Be mindful of deadlines and open enrollment periods. State marketplaces were designed to be easy to navigate, but there are bureaucratic hoops to jump through. Know the difference between HMOs (Health Maintenance Organizations) and PPOs (Preferred Provided Organizations). HMOs have a tighter network of providers, and PPOs give you wider choices. That is why they tend to be more expensive. Know the rest of the lingo too: premiums, cost-sharing, deductibles. If ever you have a question, ask.
NOTES
Chapter 4: Taming the Health Insurance Beast
1. “Stress About Health Insurance Costs Reported by Majority of Americans, APA Stress in America Survey Reveals,” APA, January 24, 2018, https://www.apa.org/news/press/releases/2018/01/insurance-costs#:~:text=WASHINGTON%20%E2%80%94%20Two%2Dthirds%20of%20U.S.,Americans%20at%20all%20income%20levels.
2. Tori DeAngelis, “Rising Health Care Costs and Access to Care Are Major Stressors—Especially for Women and Hispanic Americans,” https://www.apa.org, n.d., https:// www.apa.org/monitor/2023/06/women-hispanicsstress- health-care-costs.
3. In many cases, the Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) will be a smart move, though it is often expensive. COBRA requires an employer to offer an employee who has experienced certain qualifying events continued coverage under the employer’s group health plan at the employee’s cost for a period of up to thirty-six months. Qualifying events include the covered employee leaving or losing their job or reducing work hours, the covered employee enrolling in Medicare, divorce from or the death of a covered employee, or aging out of one’s parents’ policy when turning twenty-six years old.
Rebecca Bloom is a graduate of Yale College and the New York University School of Law. A former workplace and benefits attorney, she has served at Bay Area Cancer Connections for over twenty-six years as a patient advocate and a healthcare, insurance, and workplace advisor for women fighting breast and ovarian cancer. Bloom was a contributing writer to and editor of Breast Cancer in the Workplace, and regularly speaks at conferences and organizations on supporting women as they navigate their health journeys. She lives in the San Francisco Bay Area. When Women Get Sick is her most recent book.