The Most Important Tool for Managing Lupus

Get the Medical Care You Need

Medical consultation
Voisin/Phanie/Passage/Getty Images

It might seem obvious that the most important tool for managing lupus is to get consistent medical care. For some, however, that is easier said than done. If you live in a major city, it will be easier to find a good rheumatologist who has experience treating lupus than if you live in a rural area. Some people have to drive hours, or even fly, to their nearest specialist.

Not having health insurance is another reason some people don't get the medical care they need.

For people newly diagnosed, not knowing how to find a good rheumatologist is also a barrier.

Going without medical care for lupus is risky. The good news is that if you are in this situation, there is something you can do about it.

Meet with a Certified Insurance Agent or Certified Enroller

Many people without insurance are uninsured through no fault of their own — like not being able to afford monthly premiums or losing their coverage. If you are uninsured, find out what you are eligible for.

You might qualify for Medicaid (free, government-paid insurance) or for a plan made possible through the Affordable Care Act (also known as Obamacare). Unlike Medicaid, Obamacare requires a monthly payment and the insurance is provided through a private company. The government, however, might offer some payment assistance, if you are eligible.

Every state has a resource that helps you enroll. It's called the Health Insurance Marketplace.

To get more individualized help enrolling, find a local certified insurance agent or certified enroller. They are often employees of local social services organizations and can work with you in-person to figure out how to get you insured. They will never ask you to pay for their services. To be sure that you are working with a legitimate agent or enroller, contact your state's Marketplace and get a referral or find contact information on your Marketplace's website.

Choose the Right Health Plan

When choosing a health plan, there are important things to consider because you have lupus. You will be given plan options that provide different levels of coverage. Someone who rarely goes to the doctor except for annual checkups will need a different plan than someone with a chronic illness who sees a few specialists every month.

It's important to consider your medical needs and how much you will have to pay out-of-pocket with each health plan option. Think about added medical costs like deductibles, co-payments, co-insurance, whether your medications and medical devices are covered, and so on. (Note: If you are switching plans and you want to stick with your current doctors, make sure they are covered under the plan you choose.)

Plans with higher premiums might end up costing less, overall, if their out-of-pocket expenses are significantly lower. Work with your certified enroller or insurance agent to do the math and figure out the costs and benefits of each plan.

Contact a Lupus Organization

If you don't have insurance or are newly diagnosed and need to see a lupus doctor, your local lupus organization might be able to help.

If you are uninsured, these organizations might provide you with information about free or low-cost rheumatology clinics.

If there are no clinics that are specific to rheumatology in your area, they might know good free or low-cost community clinics or health centers near you. (Note: If you see a doctor at a community clinic or health center, they might be an internist and not a rheumatologist. In this case, bring information about lupus and treating lupus with you. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has helpful resources.)

If you are insured and simply need some suggestions, they could also recommend good rheumatologists with private practices in your area who are familiar with lupus.

If the lupus organization runs support groups, support group members are great resources, too.

To find your local lupus organization within the United States, you can do an Internet search of the word lupus and your city or state (e.g., "lupus and New York"). Lupus organizations are often divided by regions or states, so don't be surprised if you don't find one in your exact city or town. If you live outside of the United States, you can try this type of search, try a local arthritis organization, call a rheumatology center in a local hospital, or contact a researcher in your area who is studying lupus.

Other Healthcare Options

Try a public, non-profit, or university hospital. They often have significant sliding scale (reduced fees) options for people who are uninsured. Ask about charity care or financial aid at any hospital. If you don't ask, they might not come out and tell you about any special programs that offer financial help. If you are a student, your school might offer reduced cost healthcare or have a health center that you can access for free or low-cost. If you are freelancer, try the Freelancers Union. The Actors Fund has helpful resources about obtaining health insurance, especially if you are a performing artist or work in the entertainment industry. If you lose your insurance but have a rheumatologist, let them know your situation. They might be able to help you by reducing your bill or referring you to a low-cost clinic where they also practice.

When In Doubt - Ask

When it comes to living with lupus, getting medical care is your number one priority. Hopefully one of these suggestions will help you get the medical care you need. If you are still unsure, however, ask. Ask anyone you know who knows about lupus for help with getting health insurance and medical care — someone in your online or in-person support group, someone at a lupus organization, someone you know who has had lupus for a while. People in the lupus community are incredibly knowledgeable, resourceful, and love to help.