UPDATED October 23, 2023

Health insurance serves as financial protection and helps pay the costs of medical care for you and your family. But in the United States, selecting an insurance plan when you have a pre-existing condition, particularly if it is a rare disease such as Gaucher disease, can be tricky. When you rely on specialized providers and treatment to manage your disease, it can be hard to get a clear picture of costs and coverage.

For guidance in selecting health insurance, we spoke with Claire Sachs, who helps patients living with chronic diseases navigate the healthcare system. Sachs is the founder and advocate-in-chief of The Patient Advocate’s Chronicle, an experienced policy analyst, and an ambassador for the Chronic Disease Coalition. She also serves on the patient advisory boards of the American Board of Internal Medicine Foundation, United States of Care and the state of Maryland’s advisory board for diabetes.

Sachs lives with 13 chronic and recurring conditions, including type 1 diabetes and kidney disease. She has spent decades navigating the healthcare system, learning a lot of what she knows from her dad, who was a healthcare executive. She offers the following tips:

1. Learn the Health Insurance Basics

There are many ways to get insurance. Most people get their health insurance through one of these methods:

• Employer, who may offer insurance if you work between 30 hours/week and full-time
• Government-funded programs, such as Medicare (for people 65 and older or disabled people who receive Social Security Disability Insurance) or Medicaid (for low-income individuals and families or disabled people who receive Supplemental Security Income)
• Health Insurance Marketplace, a federal program created by the Affordable Care Act and known as the marketplace or exchange that covers most states
• State-run marketplaces, provided by some individual states in place of the federal Health Insurance Marketplace (see if your state has a marketplace)

To help you through the process, you’ll have access to a human resources (HR) representative (through your employer) or insurance agent (through the marketplace or government). They will be familiar with the insurance plans you’re considering.

But to understand the plans and ask the right questions, it helps to have a glossary of health coverage terms handy. The National Gaucher Foundation also offers a podcast covering the basics of Gaucher disease and health insurance. Whether this is your first time selecting health insurance or you need a refresher, it provides important information for people living with Gaucher Disease.

Open enrollment for health insurance

In the U.S., open enrollment is an annual period when you can start, stop, or change most health insurance plans. Medicare, the federal Health Insurance Marketplace, and state-run marketplaces set specific dates (usually in the fall) for their open enrollment periods. You can apply for coverage through Medicaid any time, all year. Enrollment for group health insurance depends on your individual employer.

Open enrollment dates for 2024 coverage include:

• Health Insurance Marketplace (federal exchange): November 1, 2023 – January 15, 2024 (but for coverage to begin January 1, 2024, enroll by December 15, 2023)
• Medicare: October 15 – December 7, 2023
• State-run marketplaces: Depending on the state, may begin as early as November 1, 2023, and end between December 15, 2023 – January 31, 2024

Special enrollment periods

Outside of open enrollment, people can only sign up for health insurance if they qualify for a special enrollment period or qualify for Medicaid. Special enrollment periods require a qualifying life event, such as:

• Addition of a child
• Becoming a U.S. citizen
• Change in marital status
• Loss of health coverage
• Residential move

2. Audit Your Health Spending

As you prepare for open enrollment, it’s important to examine the healthcare required to manage your disease. This process may be time consuming but will give you a good handle on what you’re going to need from an insurance plan. Make a record of:

• Medications you take and how often you need them
• Medical devices you use, and any supplies it takes to operate them
• Physicians you see and how often you need appointments
• Where you receive treatment and how frequently

Sachs recommends going back at least one year to see what you paid for each aspect of your disease. It may help to keep a running list throughout the year instead of doing it all at once. Sometimes people forget the things that were needed but fell outside the scope of routine care. Account for every expense in your audit, even if the cost may not recur. Then rank the list according to the most important plan requirements for you.

“For me, the most expensive things usually end up at the top of the list,” Sachs says. “My budget can handle less coverage for office visits because those are generally less expensive than the devices and the supplies I need. But it’s different for everyone.”

3. Decide on the Type of Insurance Plan You Want

One way to streamline the selection process is to understand your plan options. Plan types differ in how you’ll pay into the plan and which providers the plan covers.

Your plan options may include:

• Health Maintenance Organization (HMO): This type of plan tends to have a low premium (monthly cost) and deductible (amount you spend before the plan pays). But it offers little to no coverage if you choose to see a provider outside of the HMO network.
• Preferred Provider Organization (PPO): You’ll pay higher premiums and have a higher deductible. But these plans have a broader provider network. They do not require referrals from your primary care provider for specialists. They also offer some coverage for out-of-network providers.
• Exclusive Provider Organization (EPO): Unless it’s an emergency, this plan only covers services if you use providers and hospitals in the plan’s network.
• Point of service (POS): You’ll pay less if you use providers and hospitals within the plan’s network. You will need to get a referral from your primary care doctor to see specialists.

According to Sachs, most people with chronic or rare diseases choose an HMO or PPO plan. With lower upfront costs, an HMO is attractive. But keep in mind that people living with Gaucher disease may need to see out-of-network providers, and those costs can add up. Decide if you can afford the upfront costs of a PPO. Those plans offer more freedom and cost savings when it comes to provider options.

4. Read the Summary Plan Description

With your disease audit completed, you are ready to assess the health plans you’re considering. Each plan has a summary plan description (SPD). This long document lists details about how the plan works and what the plan covers.

“It’s very important to use your disease audit and look to see if the policy covers what you need and to what extent,” Sachs says. “It’s so much easier when you know what you can expect from your plan.” She recommends paying specific attention to:

Providers

Check to see if your providers are part of the plan’s network. Depending on the plan, the provider list may be part of the SPD or provided in a separate document.

For Sachs, making sure a plan covers her providers is a top priority. “I spent 20 years building an extensive network of providers,” she says. “Finding a provider who deals with a rare disease and understands the challenges you’re facing is vital to successful treatment of your condition.”

Prescriptions

Look beyond the drug categories covered by the plan and check coverage for the specific drugs you take. For people living with Gaucher disease, drug pricing is a real concern. Look closely at the specialty pharmacy section of the plan.

“If they don’t list out your specific treatments in the specialty pharmacy section, you may need to circle back and talk to them,” Sachs says. “Ask what percentage the plan pays, what the copay costs will be, and how often you have to complete a specialty pharmacy renewal.”

Costs

The summary plan description may not lay out costs in a way that’s easy to understand, especially for rare diseases. Ask your HR representative or insurance agent to perform a benefits investigation. This investigation can predict the costs according to your exact needs.

“Be aggressive, because this is your money,” Sachs says. “When you’re a person with a chronic illness, it’s very important to know exactly what those costs are going to be so you can prepare.”

5. Take Advantage of a Pre-Tax Healthcare Account

You may qualify for an account that helps you save on both taxes and health-related costs. Either you or your employer put pre-tax money into the account.  You can use that fund for certain out-of-pocket medical and prescription expenses.

The account options include:

• Flexible Spending Account (FSA), funded by employees and usually offered alongside HMO plans
• Health Reimbursement Arrangement (HRA), funded and controlled by employers
• Health Savings Account (HSA), owned by the insured person and available through employers or the marketplace for high-deductible health plans

If you are considering an FSA or HSA, check the terms of the account. FSAs tend to be use-it-or-lose-it plans, although recently, some employers have allowed $500 to roll over to the next year. You can take the money you accumulate in an HSA account with you when you leave the employer or marketplace plan.

6. Avoid a Lapse in Insurance Coverage

When you’re dealing with a chronic disease, delay of treatment can create issues now and cause a ripple effect. “Once a lapse in treatment causes damage, sometimes it’s hard for the body to rebound,” she says. “As you prepare to make a change in your insurance, it’s important to know exactly when your insurance cuts off and exactly when the new plan starts.”

If you need bridge coverage between the two plans, COBRA (the Consolidated Omnibus Budget Reconciliation Act) may be an option. It gives you the ability to continue your current coverage for a limited period, but you’ll pay 102% of the cost.

What if you don’t have new employer-sponsored insurance lined-up? Sachs says you can take COBRA as a bridge. But she recommends immediately searching for a less-expensive, more-convenient solution through the marketplaces or government. As soon as you have a new plan in place, or if you secure insurance through an employer, end the COBRA policy you’re using as a bridge. Most employers offer COBRA for 12 or 18 months, and coverage is retroactive if you are struggling to decide.

7. Ask for Help With Your Insurance Plan Selection

Knowing which insurance plan is right for you can be tricky, especially if you are living with Gaucher disease. Sachs recommends starting with your own research, then using available resources to get additional information. These resources include:

• HR representatives, available for people using employer-sponsored insurance
• Insurance agents, who represent specific plans for the insurance marketplace or government-funded insurance
• Case managers (through drug companies), who may be able to offer insurance guidance specific to your treatment
• Professional patient advocates, who often specialize in insurance (find a healthcare advocate)
• Nonprofit organizations, who can help you navigate insurance selection or suggest more resources in your area

How the National Gaucher Foundation Can Help

If you or a loved one lives with Gaucher disease, the National Gaucher Foundation is here for your family. The National Gaucher CARE Foundation (NGCF) offers financial assistance with medical costs for eligible individuals living with Gaucher disease, and their families.

SOURCES

• Centers for Medicare & Medicaid Services – Glossary of Health Coverage and Medical Terms: https://www.cms.gov/CCIIO/Resources/Forms-Reports-and-Other-Resources/Downloads/uniform-glossary-final.pdf
• Healthcare.gov – Health insurance plan & network types: HMOs, PPOs, and more: https://www.healthcare.gov/choose-a-plan/plan-types/
• USA.gov – Finding Health Insurance: https://www.usa.gov/finding-health-insurance
• U.S. Department of Labor – Continuation of Health Coverage (COBRA): https://www.dol.gov/general/topic/health-plans/cobra