Affordable Health Care for Lupus Patients

Health Insurance for Lupus Patients: Affordable Health Care

Lupus, an Expensive and Potentially Disabling Disease

Dealing with a chronic disorder can be expensive. Yearly average medical costs for SLE patients range from $24,000 to $45,000 for mild SLE and up to $83,000 for severe SLE (2010-2016 data). These amounts include medication payments, doctors, nurses, lab tests, x-rays, medical equipment, and hospitals.

Yet these numbers do not tell the whole story. Indirect costs can be substantial, including the loss of wages from time missed from work. A 2016 Swedish study showed that these averaged $23,000 per year per patient. This amount is three times greater than the figure we quoted in the first edition of this book in 2014.


Private Insurance


High Deductible Health Plans



Medicare Part A

Medicare Part B

Medicare Part C

Medicare Part D



What to do if you are uninsured or underinsured or cannot afford healthcare

Flexible Spending Accounts

Insurance Premiums


Prior Authorizations for Medications and Procedures


Although many people with SLE have excellent jobs with good sick-day policies and health insurance benefits with low out-of-pocket payments, others are less fortunate. Patient deductibles (what the patient must pay out of pocket before insurance coverage) have become unaffordable for many. Some have no insurance and must pay for everything out of pocket or rely on government assistance.

In addition, although most SLE patients live long, normal lives and can work without significant problems, some become disabled and cannot work. That, plus the loss of income and the need to deal with the bureaucracy and paperwork necessary to get assistance, can be overwhelming. These matters are covered in the online disability chapter. The current online chapter provides information about insurance and affording medications.

In addition, although most SLE patients live long, normal lives and can work without significant problems, some become disabled and cannot work. That, plus the loss of income and the need to deal with the bureaucracy and paperwork necessary to get assistance, can be overwhelming. These matters are covered in the online disability chapter. The current online chapter provides information about insurance and affording medications.

Health Care and Insurance

There are many ways people get their health care in the United States. This section discusses some of them.

Health care benefits can be divided into several broad categories. Some people have private insurance health care from their employers or buy it individually. Some people get health care through government-run programs such as Medicare and Medicaid. The uninsured must pay for everything out of pocket. If you fall into this last category, we will provide helpful advice. Also, see our Patient Resources page.

Private Health Insurance

There are two major types of private health insurance: group plans and individual plans. Most Americans with private health insurance are covered under group health insurance plans offered by their employers. Employees usually have little to say about which health care plan they get or its terms.

The larger the company you work for, the greater your chances of better health care benefits. Large companies with many employees can buy many policies. By having many healthy individuals in a plan, your employer can bargain for better benefits at reduced costs.

Smaller companies have lower bargaining power and more difficulty getting better rates. Suppose they do get better insurance coverage benefits for their employees. In that case, it may come at the cost of paying higher out-of-pocket costs (through co-pays and deductibles).

Some people who get group health insurance have the advantage of being able to choose from different plans offered by their employers. Federal government employees are a good example. They can pay different costs out of pocket for various plans. In this section, we provide advice on these choices because what may appear to be the least expensive health care plan may be more costly in the end.

The second fundamental way of getting private insurance is through an individual health insurance plan. These plans are paid for entirely by individuals. Individual plans may be needed by people with jobs with no group insurance or by self-employed individuals. Because single individuals do not have the luxury of spreading health care risks among many people (as occurs with group health insurance plans), individual plans cost more and tend to offer fewer benefits.

A considerable improvement since the first edition of this book was published is that the Affordable Care Act prohibits insurance companies from denying coverage to individuals with preexisting conditions (such as lupus). Before the act became effective on January 1, 2014, it was hard for many lupus patients to obtain individual health plans.

There are many different types of major insurance plans, including health maintenance organizations (HMOs), point-of-service (POS) plans, preferred provider organizations (PPOs), high-deductible health plans (HDHPs), exclusive provider organizations (EPOs), and indemnity plans. We describe these below.

Health Maintenance Organization (HMO).

HMOs require you to have a primary care provider (PCP), often at a family practice or an internal medicine office, who acts as a gatekeeper to other specialists you may need to see. You are required to see your PCP for all initial medical care. When a specialist is necessary, such as a rheumatologist for SLE, you must obtain a written or electronic referral from the PCP. The referral may be effective for only one visit or several visits. Also, insurance-required referrals have expiration dates. You must obtain a new referral if you have not used all your approved visits by the expiration date.

HMOs are often one of the least expensive forms of private insurance since the PCPs working as gatekeepers reduce health care costs by limiting the number of specialist visits. Usually, the total premium (amount of money you pay for the plan) is one of the lowest. Likewise, the co-pays (short for co-payments) the individual pays for each doctor’s visit are usually lower than in other plans. Some plans do not charge any co-pay when seeing a PCP. Due to these low costs, HMO plans are the most common type purchased by individuals who do not receive employer-provided plans.

Seeing a specialist frequently and getting a referral for each visit can be difficult. Members must often see their PCPs more than medically necessary to keep up with the referrals. A 2007 study showed that SLE patients with HMO plans visited their doctors half as often as patients with fee-for-service programs (described below). Possible reasons for this include it being cumbersome to get referrals from PCPs to see specialists or PCPs not giving referrals, thinking they are unneeded. It is still being determined if this results in worse outcomes or not.

Most HMOs stipulate that it is the individual’s responsibility to keep up with referrals to ensure that they are up to date. A referral to a specialist usually has a time limit and expires after a specific date. It is up to the individual to make sure that the referral is good for the appointment with the specialist. The specialist can only see the patient with an up-to-date referral (per the specialist’s HMO contract).

This time limitation can cause problems in some cases, such as when an appointment with a specialist must be rescheduled. Rescheduling occurs for many reasons, including weather closures of the office, the patient being unable to make the appointment, or specialist unavailability. It is up to the individual to get a new referral if that new appointment occurs after the referral’s expiration date. Because of the many and often complicated requirements of HMOs on these referrals, most specialists, in turn, stipulate that it is the patient’s responsibility to keep up with them. It is usually too much work for a doctor’s office to keep track of this.

In addition, the PCP usually must also give the person a referral for any special procedures or tests ordered by the specialist. For example, an HMO may require that the person obtain a referral, even for a simple x-ray ordered by the specialist. A little-known consequence is that the study results often go to the PCP instead of the ordering specialist, delaying diagnoses and treatments. In our area, this is a constant source of frustration for our health care providers and patients. It has resulted in delays in appropriate medical management.

Although many people may decide that it is advantageous to participate in an HMO due to its lower cost, they should consider the potential downsides. The referral system can be challenging to maneuver, and patients participating in HMOs must see specialists who are members of that HMO. This limits a patient’s choices.

While an HMO can be a good, low-cost alternative for people who rarely see specialists, it can quickly become a burden to those with chronic illnesses. In SLE, for example, not only do people need to see their rheumatologist around four times a year, but they usually must also see an ophthalmologist (eye doctor) twice yearly to monitor their hydroxychloroquine (Plaquenil) therapy. Many SLE patients need to see other specialists regularly as well. So, if you have a choice, think twice about the cost.

Another downside of an HMO is that you may need to see a doctor who does not participate in the HMO. For example, suppose you are visiting another city and need to see a physician. If you see doctors who are not in your HMO, you may not be covered and face large medical bills. However, some HMOs offer emergency benefits to cover these situations.

An HMO may be a good option if you are a well-organized person. An HMO may also be an excellent choice if your lupus is mild, under reasonable control, and if you do not see many doctors.

People with limited incomes are disadvantaged and may have to choose an HMO over more costly, flexible plans such as PPOs. This is one of many health care disparities in the United States, as discussed in chapter 19 of the second edition of The Lupus Encyclopedia.

High-Deductible Health Plan (HDHP).

An HDHP plan has high out-of-pocket costs for the covered individual yet low upfront premium costs. As a result, they have become more popular among employers. In 2023, the US Internal Revenue Service defined an HDHP as a plan with at least a $1,500 or higher deductible for an individual ($1,600 in 2024) and $3,000 or more for a family ($3,200 in 2024). HDHPs cannot have deductibles above $7,500 for an individual in 2023 ($8,050 in 2024) and $15,000 for a family ($16,100 in 2024).

            HDHPs can be combined with a Health Savings Account (HSA). An HSA allows a person to use pretax dollars to pay for qualifying medical expenses, even over-the-counter therapies (usually requiring a doctor’s written prescription). Some employers are generous enough to place money into the HSA.

            An HDHP can be best for young patients with few medical problems who do not foresee high medical costs. However, this only applies to some SLE patients and is often undesirable.

Point-of-Service Plan (POS).

A POS is a hybrid HMO plan. You can utilize doctors and specialists who participate in the plan using referrals, as outlined above. However, you can also see doctors and specialists outside the plan (out-of-network providers). You have lower co-pays when you use doctors in the plan’s network. When you use an out-of-network provider, you pay more to see that doctor by paying either a high deductible or a co-insurance charge.

These plans are more expensive than traditional HMOs because they provide greater flexibility. This is a good option for people who want the HMO’s financial benefits when visiting specialists in the plan while providing the flexibility to see specialists outside the plan. This type of plan can be excellent if you have seen a rheumatologist you like for a long time and then need to change insurance plans. If you switch to a POS plan to which your rheumatologist does not belong, you can continue seeing your rheumatologist.

Preferred Provider Organization (PPO).

PPOs are the most common health plan offered by employer-sponsored plans. A PPO costs more than the two plans described above yet provides much more flexibility. You are not required to have any referrals to see specialists. This makes it much easier for people with chronic disorders like SLE.

Most PPOs have provisions that allow you to see doctors who are not part of the PPO. However, this is more expensive. For example, a PPO may pay 90% of the cost of seeing a specialist who participates in the plan but only 70% if the specialist does not.

            Since SLE patients often need to see many specialists, PPOs are often one of the best plans. Not having to get referrals every time you visit a specialist eliminates a significant hurdle.

Exclusive Provider Organization Plan (EPO).

EPOs cover a group of doctors, clinics, and hospitals within one health care network. Participants can receive care only from these network doctors and locations. Kaiser Permanente is a well-known health care network offering EPO plans.

Although there is little to no flexibility in an EPO, there are few, if any, extra costs to the patient. Another advantage is that patients do not need referrals. This plan can benefit someone who wants low out-of-pocket costs and does not mind being limited in doctor and facility choices.

Indemnity Plan (also called Fee for Service and Traditional Plan).

This is the least restrictive type of plan. The person with this plan can see any doctor; referrals are unnecessary.

Such a plan may have a high deductible, where the person is responsible for paying a certain amount out of pocket before the insurance plan starts to pay for medical expenses. The yearly premium is often lower than other plan types.

A plan may pay 80% of health care costs after the annual deductible is met, leaving the member to pay the additional 20%. Most plans also usually have a maximum yearly amount the policyholder must pay for medical costs. Once that amount is met, the indemnity plan may pay up to 100% of the additional costs.

Although these are the least restrictive plans, they usually require pre-authorizations (or prior authorizations) for some medical procedures and tests. A doctor must fill out pre-auths (or prior auths) to prove that a medication, test, or procedure is needed. Pre-auths attempt to reduce the number of expensive drugs and medical procedures.

Government Insurance Programs

The two most extensive government health care programs are Medicare and Medicaid. Other government health care systems include the Indian Health Service, the Military Health System and Defense Health Agency, TRICARE (the civilian health care section of the military system), the State Children’s Health Insurance Program (SCHIP), and the Veteran’s Health Administration (VA). We do not discuss these other systems but encourage you to use them if you qualify.

While most people who qualify for these programs (such as the Indian Health Service and the VA) know their eligibility, many are unfamiliar with SCHIP. It provides medical care to the children (18 years old and younger) of families with difficulty affording medical care (even if they are not eligible for Medicare or Medicaid). All states offer SCHIP with federal support, but each runs its plan differently. If you have children and cannot afford health care, call 1-877-KIDS-NOW (1-877-543-7669) to learn more about enrolling your children.


Medicare is run by the US federal government and provides medical care assistance to people 65 years old and older. It also helps people of all ages who are disabled, blind, have amyotrophic lateral sclerosis (Lou Gehrig’s disease), or have end-stage kidney failure. The Medicare system has four parts: A (hospital and hospice), B (medical), C (Medicare Advantage Plans), and D (prescription drug plans).

Medicare Part A (Hospital and Hospice Insurance).

Everyone eligible and enrolled in Medicare gets Part A benefits if they have worked enough in the past to earn at least 40 Social Security credits.

Medicare Part A covers some of the costs of overnight hospital stays, including food and medical tests. It can also cover some of the costs of up to 100 days in a skilled nursing facility if the stay begins after a three-night hospitalization and if skilled nursing services are required because of the hospital stay.

Suppose a physician determines that someone has less than six months to live. In that case, Medicare Part A will pay for hospice care, including drugs needed for comfort (such as pain relievers) and grief counseling.

Medicare Part B (Medical Insurance).

Part B covers expenses not covered by Part A, including outpatient doctor visits, labs, x-rays, vaccinations, medications given by doctors in their offices, and dialysis. It can also cover medical equipment costs such as canes, walkers, wheelchairs, motorized scooters, durable medical equipment (such as braces), and home oxygen.

Medicare Part B can be deferred if the person or spouse is still working and if they have health insurance through their employer. However, if they are not working, they are subject to a monetary penalty if they are not enrolled in Part B. You must enroll in Part B within a specified time, around your 65th birthday, unless you are exempt due to having work-related health insurance.

The premium costs for Medicare Part B are automatically deducted from your Social Security check. In 2023, the general monthly premium was $164.90 and higher. The annual deductible was $226. These amounts can be higher or lower, depending on income level. After the necessary out-of-pocket yearly deductible is met, Medicare pays 80% of these medical expenses. The participant pays the remaining 20%. Not everyone must pay a monthly premium for Medicare Part B.

Medicare Part C (Medicare Advantage Plans, MAPs).

This is an optional plan. The Medicare Advantage Plans (MAPs) are private insurance plans that replace traditional Medicare. As described above, MAPs can be HMOs, PPOs, or other plan types. These plans attract many people because they can pay for medical expenses not covered by traditional Medicare. For example, some cover fitness programs, dental care, and vision care. Premiums can be low, there is a cap on out-of-pocket expenses, and “all-in-one coverage” Makes it convenient.

While you must still pay your Medicare Part B premiums automatically deducted from your Social Security checks, you pay little to no extra money for MAP premiums. However, you usually have co-pays for services such as doctor visits. But once you reach your yearly out-of-pocket limit, the MAP pays for 100% of your medical costs, not including drugs and some extra benefits.

These advantages can be offset by the fact that MAPs allow you to go to only the doctors, clinics, and hospitals in their network. Pre-authorizations are often required for specialized care. This can be problematic for lupus patients who see many specialists. Obtaining referrals to these doctors (including your rheumatologist) can be complex. Also, the pre-authorization process required for medical procedures can take time and effort. Then if you are denied, fighting the denial can be time-consuming and stressful.

Choosing between traditional Medicare and a Medicare Advantage Plan can be difficult. Be careful of the sales pitches. Do your homework before applying for one. Check with other people (friends, family) and research internet resources before buying into a sales pitch.

Office Administrators (Office Managers) know first-hand which insurance plans are the most troublesome and which provide the best medical coverage. In other words, ask your rheumatologist’s office administrator what they recommend for your area, especially finding out which insurance plans to avoid.

There are several potential advantages of MAPs. They can sometimes be cheaper overall than traditional Medicare. Some offer services not offered by traditional Medicare, such as eyeglasses, hearing aids, and free PCP wellness exams. Some also provide emergency medical services outside of the United States, which traditional Medicare does not offer.

MAPs may result in better care. A 2021 study showed that people with a MAP were more likely to have preventative medicine measures and overall better health outcomes than those with traditional Medicare. These differences were most remarkable among non-White minorities.

These advantages must be weighed carefully against potential disadvantages, such as restrictions on covered doctors, hospitals, and services. Overall medical costs can end up being more than what they would have been compared to keeping traditional Medicare.

      Note that you cannot have both a MAP and Medigap (discussed later).

      Important: If you choose a Medicare Advantage Plan, you no longer have traditional Medicare. Keep your red, white, and blue Medicare card tucked in your wallet in case you must show it. You must also provide your new Medicare Advantage insurance card to every doctor and medical facility you visit.

Medicare Part D (Prescription Drug Plans).

Everyone eligible for Medicare Part A or B is also eligible for Part D. Since traditional Medicare (Parts A and B) does not cover drugs outside of a doctor’s office, Medicare Part D helps cover the costs of prescription drugs.

This is a voluntary plan, requiring that the person applies for the plan through private insurance companies. The plans vary a lot. Therefore, it is essential to do your homework and compare the benefits. The plans charge various monthly premiums, have different required deductibles, and have different medication co-payment amounts. In addition, they usually have formularies, which are lists of drugs they cover and those they do not. If a plan sounds good, but the medication you require for your health is outside its formulary, that plan would not be a desirable choice.

One disadvantage of Medicare Part D is the “donut hole” gap. In 2023, once an individual reaches a limit of $4,660 for prescription drugs, they are responsible for 25% of the costs of medicines. Subsequently, after spending $7,400 on medications, the “donut hole” closes. The person then enters the “catastrophic coverage” portion of the plan, where the drug costs go down significantly.

For SLE patients, a significant problem is that needing to take many different kinds of medications can quickly put them into this donut hole. Many of the drugs are expensive. Many people are on fixed incomes and cannot afford the medicines while in the donut hole.

Medigap (Medicare Supplement Insurance).

Medigap can be an attractive alternative to Medicare Part C. Medigap is used with traditional Medicare and covers out-of-pocket costs. It allows you to choose from more health care providers than Medicare Part C.

Medigap plans may be purchased and usually require paying a monthly premium. They pay for health care services not paid for by Medicare. For example, Medicare recipients must pay for 20% of their health care benefits after they meet their yearly deductible. Many Medigap policies will cover this 20%. Medigap plans purchased before 2020 can cover the Medicare Part B deductible payments. However, as of 2020, if you are new to choosing a Medigap plan, the Medigap plan will not cover the Medicare Part B deductible. You must pay your health care professional the Medicare deductible. Also, if you had one Medigap plan before 2020 and switched to a different one after 2020, you would lose this deductible payment coverage.

These plans can be helpful, especially for people with high medical costs who can afford to pay Medigap premiums.

Medigap cannot be used with the Medicare Advantage Plans of Medicare Part C. You can use either a MAP (without Medicare) or traditional Medicare along with Medigap.


Medicaid is a welfare program that helps low-income people with health care costs. The states administer these programs in conjunction with the federal government. Since the states run the programs, eligibility and services vary from state to state. Suppose you have limited income and few assets (savings and property, not counting your primary home and car). In that case, you should contact your state Medicaid department to see if you are eligible. You can participate in both Medicare and Medicaid.

What to Do If You Are Uninsured, Underinsured, or Cannot Afford Health Care

Not having health insurance or not having enough money for health care can be catastrophic for SLE patients. While the best solution is to keep searching for a decent job with good health benefits, other options are available to help some get through such a crisis. Some of the tips we offer here may also be useful for people with insurance but still have difficulty accessing health care. Also, go to our website’s Patient Resources page and look under “Financial Assistance” for a list of aid agencies.

Get good advice if you are laid off or lose your health insurance.

In addition to working hard to find a job as quickly as possible, it is also vital for you to find health coverage as soon as possible. Some places that may help include Healthcare Advocates, the Patient Advocate Foundation, and Accessia Health. Find out immediately if you can extend your health insurance after losing your job through COBRA (Consolidated Omnibus Budget Reconciliation Act), discussed at the end of this chapter).

Be honest and forthcoming about not having money for healthcare.

Suppose there is an office administrator in your doctor’s office. In that case, that is the person you want to speak to about making special arrangements. When making any of the requests listed below, be honest about your challenging financial situation. If there is no office administrator, speak to your doctor, though note your medical appointments should be focused on your medical condition.

Ask for discounts from doctors’ offices and hospitals.

Most doctors’ offices and hospitals will decrease rates for people without insurance. For those who have insurance, most of your doctors’ offices usually cannot reduce your office visit co-pays, which must be collected from you as part of a contract with your insurance plan.

The same goes for your hospital. Hospitals often have a financial assistance department or representative. At a large hospital, be prepared to show your financial hardship. Go equipped with information such as family income, bills (utilities), and proof of state residency. It can help you get the aid you need.

Set up an interest-free payment plan with your doctor or hospital.

If you owe money, the worst thing you can do is ignore the situation and not pay. Pay at least something every 30 days; it is better than paying nothing. Make an appointment with the office administrator or a hospital financial assistance representative to explain your situation. See if you can get the amount of money you owe reduced and work out an affordable payment plan. Only agree to a plan within your budget. It is better to pay a smaller amount monthly and stand behind your word by making the payments than to agree to a plan you cannot afford. Payments must be received every 30 days to stay current with your doctor. A doctor’s office would rather you pay a little bit at a time over an extended amount rather than paying little to none of what you owe. Working out a plan ahead of time saves the doctor’s office money because the office staff will not have to keep calling you. They will also not have to keep sending you letters asking for payment and will not need to hire a collection agency. You can keep your credit score from being affected if you do these things before you begin to run behind on your bills.

Ask your doctor if generics are available in place of expensive brand-name medicines.

Doctors often prescribe newer brand-name drugs that do not have generic equivalents because they may be better than older medicines for several reasons.

For example, a more recent therapy may come in a slow-release, once-a-day brand. At the same time, the older immediate-release generic may have to be taken four times a day. Although it is easier for a patient to adhere to the once-a-day slow-release brand, the cost, compared to the generic immediate-release form, may outweigh the convenience.

Your doctor may also be able to offer you a sample of a new drug. Doctors often have such samples and give them to patients to ensure that the drug works and is tolerated before committing someone to the costs of a prescription.

If you are prescribed an expensive brand-name drug, ask your doctor if a cheaper, generic medicine can take its place. Realize that this substitution may be complicated. For example, a doctor may not know precisely how to convert a person from a medicine in one class of drugs to a different medication in another. It may take trial and error on your doctor’s Part to try this.

There also may be no possible generic equivalent. If a drug has no generic equivalents, ask if your doctor has medication samples or any coupons (or use online coupons like GoodRX, Blink Health, or Cost Plus Drugs). If you want to avoid bothering the doctor, ask the receptionist, nurse, or medical assistant for samples. The doctors in my office are okay with patients calling the office and asking for samples if they keep up with the necessary labs and appointments to monitor the medicine in question.

Another option is to contact the pharmaceutical company that makes the medicine and see if it has a patient assistance program. Pharmaceutical companies often have copay assistance cards for their drugs that have not gone generic yet. Some programs are based on household income, so you may need to send in proof of income. Most brand-name drugs have easy-to-find websites using the name of the drug. For example, Benlysta’s website is, Lupkynis’s is, and Saphnelo’s is

Apply for patient drug assistance programs.

Some agencies can help you with prescription drugs. Go to the Patient Resources page of our website and look under Financial Assistance. New agencies become available over time. If you know of any that are not listed, please mention them in the Comments section of that page so we can add them.

Ask for drugs covered in pharmacy low-cost generic drug lists.

Many pharmacies have low-cost generic drug lists (often $4 per month or $10 per 90 days). Get a copy of this list from each pharmacy in your area. Check the lists for the types of medicines you are taking. If drugs on the list could replace a more expensive drug, ask your doctor if this change is possible. Take the lists with you to doctors’ appointments. If you are prescribed a new drug, ask your doctor if they can put you on one from the list.

Ask your government representatives for help.

Some government agencies can provide health care support. However, the type of agencies and support among cities, counties, and states. Contact your local city councilperson, mayor’s office, state-level congressional person, or federal-level representative or senator. Be honest about your financial situation and explain that you have a dangerous medical condition requiring treatment you cannot afford. They may be able to direct you to organizations you may not have known about that can be helpful.

Contact your closest lupus advocacy group as well as other patient advocacy groups.

They usually have a list of local and national organizations that help with the health care of people who do not have insurance or the financial means to get adequate health care. Examples of groups are listed under Lupus Patient Advocacy Organizations on the Patient Resources page of our website.

Go to a publicly funded clinic and local health department.

Publicly supported health clinics often provide free services, including PAP smears, vaccines, pelvic exams, mammograms, cholesterol level checks, blood pressure checks, glucose (sugar) checks, and electrocardiograms (ECGs). You can get information about clinics in your area by contacting the Health Resources and Services Administration at 877-464-4772. Additional low-cost health care clinics not run by the federal government may also be available. Make sure you find them, make an appointment, and take advantage of all the services you can. There are even clinics specifically for people with SLE. You can call the National Institute of Arthritis and Musculoskeletal and Skin Diseases at 1-877-226-4267 to see if a clinic is nearby.

Contact a teaching hospital rheumatology clinic.

Some rheumatology clinics at large teaching hospitals can see patients without insurance. This may be especially true if they are researching lupus. Volunteering to participate in a lupus research study is an excellent way to get your foot in the door. Call the clinic, be straightforward, and explain that you have no money or insurance and desperately need health care. Ask them if they can provide any care and if they have any research studies from which you could benefit. You can also find research assistance under Lupus Research and Patient Registries on our Patient Resources page.

Go to health fairs for free services.

Health fairs sometimes offer free services such as mammograms, bone density measurements, cholesterol level checks, blood counts, chemistry tests (kidney, sugar, and liver function tests), blood pressure measurements, hearing tests, and vision screenings. Make sure to keep copies of your results and keep them organized in your home personal health records.

Ask your doctor to order only vital tests.

SLE is a complex disease that ultimately involves many tests, some of which are expensive (such as anti-ds DNA, C3 complement, and C4 complement levels). Ask your doctor to order only the bare necessities. The minimum SLE lab requirements, in my opinion, are a CBC (complete blood cell count), urinalysis, a random urine protein/creatinine ratio, and a chemistry panel that includes ALT (liver enzyme) and serum creatinine with a calculated eGFR (estimated glomerular filtration rate).

Get assistance from new lab companies.

There are currently many labs that diagnose and manage lupus. Many more are under research, and we expect the numbers to grow significantly in the near future. The companies that run them tend to assist low-income people without insurance.

An example in 2023 is Exagen, Inc., which has tests that can help diagnose SLE (AVISE Lupus Test) and related conditions (AVISE CTD Test). It also does the SLE Monitor Test, which includes the expensive labs mentioned above and newer, improved tests (such as EC4d, anti-C1q, and anti-dsDNA by CIA methodology, chapter 4). You can also have your hydroxychloroquine and methotrexate drug levels measured. Exagen provides assistance for people of low income; just be prepared to prove your income level.

Doctors do not need to draw Exagen labs in their offices to use them. Exagen uses independent labs that are easy to find with their online telAVISE Draw Site Locator. I recommend going to this locator page, printing out the order form, and filling out all your personal information beforehand. Then, hand the form to your doctor to check off the tests you want, and ask the doctor to sign the document. Also, select the HCQ and MTX drug level tests if you take those medicines. Then, take the signed order sheet to one of the labs on the AVISE website. However, make sure to contact Exagen first regarding your out-of-pocket cost.

For patients who have symptoms suggestive of SLE or a related disorder but do not have a diagnosis, I recommend also considering the AVISE Lupus Test, AVISE CTD Test, AVISE Prognostic Test, AVISE anti-CarP, AVISE Vasculitis AAV, and AVISE SLE Monitor Test.

Ask x-ray and blood-drawing offices for a special discount and compare prices.

Call all the offices in your area when you need to get x-rays and labs, ask to speak to the office manager or billing department, and explain that you will pay out of pocket but have only a little money and need help. Ask for a discounted rate and promise to pay before you get the test done with cash. Tell them precisely what tests you need. Once you’ve made your calls, choose the place that gives you the best rate.

The two largest private labs used by insurance in the United States are LabCorp and Quest Diagnostics. Both have their own financial hardship programs. Click on the links in the first sentence of this paragraph.

If your rheumatologist does lab tests inside the office, ask the office administrator how much they cost. Do not be ashamed to say that you need financial help. Your rheumatologist is more likely to give you a better rate than an independent outside company since you already have a relationship with your doctor, and they have a personal stake in your doing well. If you pay upfront with cash, you should get a fair price.

Choose a cheaper hospital.

When you must go to the hospital, choose a nonprofit hospital, a teaching hospital, a charity hospital, or a public hospital instead of a for-profit hospital. Call the billing or social work departments beforehand to determine if your local hospitals fall into one of the above categories. Ask for a hospital discount.

Avoid duplicate tests; keep copies of all test results.

A big downside of the current medical system is that lab results (blood, urine, x-rays, and so on) are not centralized. Because of this, unfortunately, it is common to repeat tests because the doctors do not have the results of each other’s tests (even if all are done at the same place, like LabCorp).

A way to get around this is to take things into your own hands. Every time you get a test done, contact your doctor’s office to get a copy of the test. Make sure to give the office staff enough time to get the result back and file it into your chart; if you call too soon for a test result, it can be more challenging to get the result. Ask the front desk or receptionist to mail you a copy or arrange to stop by the office for a copy for your own personal records.

Also, LabCorp and Quest Diagnostics allow patients to get their own results from the internet patient portals. Download and print out the results for your doctors (don’t just store them on your smartphone).

Keep these copies well organized in your own personal home records. If you need to see another doctor and think they may need the result, photocopy it and bring it to your next visit. Also, always carry copies of your records with you. You may avoid having unnecessary tests done.

Look for transportation options to doctors’ offices and hospitals.

If you do not have your own transportation, contact local elected representatives (town council person, state-level, and federal-level representatives and senators), senior citizens’ centers, free medical clinics, and hospital social worker’s office to find local services. Free transportation services are often available if you have Medicaid, so contact your local Medicaid office.

Look for bargains on medical equipment.

Go to Goodwill, the Salvation Army, yard sales, and thrift shops to find good deals on medical equipment such as wheelchairs, canes, scooters, crutches, walkers, hospital beds, bedside commodes, shower chairs, lift chairs, and electric stair climbers.

Learn to budget.

When strapped for money, it is even more important to learn to keep and stay on a budget. Before buying anything, ask yourself, “Is this something I need or something that I just want?” Be honest. If it is not something you need, skip it.

Eat healthily and cheaply.

Eating healthy foods helps lupus and decreases health care costs in the end. Eating healthy food is cheaper than unhealthy food (think fast food, chips, and soda pop). There is growing evidence that you can reduce inflammation through diet.

Drink lots of water instead of soda pop. Tap water is generally safe and much cheaper than bottled water. Drink at least eight to nine 8-ounce servings daily (if your doctor does not have you on a fluid restriction). “Shop the perimeter” of the store (near the store’s walls), where fresh fruits and vegetables, dairy, and fresh meats are. The central aisles have more expensive (and less healthy) canned goods and bagged foods. Large bags of frozen vegetables are inexpensive. Buy substantial amounts of chicken fish on sale. Prepare it broiled or baked (not fried), and remove chicken skin before eating it. Do not eat junk food or eat out (which is usually more expensive than preparing food yourself). Learn to buy in bulk, look for sales, and use coupons. Buy generic store brands instead of the more expensive brand names. Eat smaller portions. Americans, unfortunately, are used to eating oversized servings, which significantly contributes to obesity.


Exercise can be free, whether alone at home or outdoors or taking free classes offered by some seniors’ groups. Lupus patients who exercise regularly tend to be healthier overall and require less medical care than patients who do not exercise. Regular exercise leads to reduced health care costs. You do not need an expensive health club membership. Check out what is available in your community.

One of my favorite cartoons (by Randy Glasbergen), which hangs in my office, shows a doctor asking a patient, “What fits your busy schedule better, exercising one hour a day or being dead 24 hours a day?” This is so true.

Stop smoking.

Smoking is expensive. Plus, it increases SLE severity, keeps hydroxychloroquine (Plaquenil) from working, and causes early heart attacks, strokes, and many other horrible conditions (cancer, emphysema, and so on).

Just calculate how much money you would save if you stopped smoking. But don’t stop there. Your future health care costs would be lower if you quit smoking because your lupus would be under better control, and you would be less likely to develop heart disease, strokes, or cancer. You can contact your local free health care clinic or go online for free stop-smoking assistance.

Learn to treat some conditions on your own.

The Lupus Encyclopedia has many recommendations for treating some conditions on your own without using drugs. Put these suggestions to use. The conditions include gastroesophageal reflux disease, insomnia, fatigue, and joint pain. You can download and print out free information on these subjects and many more. Many people can adequately control these problems by healthy eating, exercising, eliminating poor lifestyle habits, and practicing the non-drug recommendations discussed. We include many of these recommendations in our “Lupus Secrets.”

Consider working a part-time job that has good health insurance.

Some companies offer health insurance to part-time employees. Hospitals and local governments also often offer part-time employee health benefits. Other part-time jobs, such as teacher aide, may also provide health insurance.

If you are disabled and cannot work, apply for disability ASAP.

Keeping a job (even part-time) with good health benefits is better for your health and finances. However, if you become disabled, it is best to apply for disability as soon as possible. Go to our online page that gives practical advice on getting disability. Get help from a lawyer who specializes in Social Security Disability. You can find assistance from the National Organization of Social Security Claimants’ Representatives.

Apply for Supplemental Security Income (SSI).

If you have limited income and minimal assets, apply for SSI, a welfare program aimed at helping people with the lowest incomes. The requirements for SSI are strict, but if you satisfy these requirements, it can add a little bit to your income benefits.

Get your child on the State Children’s Health Insurance Program (SCHIP).

This state-run welfare program is dedicated to medical care for children from lower-income families. Even if you do not meet the strict requirements for SSI or Medicaid, you may still be able to get your child help from the Children’s Health Insurance Plan. Just call 1-877-KIDS-NOW or go to their website.


Additional Health Care Options and Definitions


Flexible Spending Accounts (FSA)

An FSA is a financial account that people can set up through their employers, allowing them to save on medical expenses. An advantage of Flexible Spending Accounts is that the money is not subject to income payroll taxes. The amount is deducted from a person’s gross income, lowering the income tax they pay.

Suppose you pay $2,000 yearly for your health care and put $2,000 a year into an FSA. That could be a good bargain. For example, if you are in a 30% income tax bracket, it is like having a coupon for 30% off. Using up all $2,000 that year is like having an extra $600 in your pocket instead of that $600 going to the Internal Revenue Service as income tax.

Money in FSAs can be used for doctors’ co-pays and to pay for prescriptions, medical devices, dental work, eye exams and glasses, and even over-the-counter drugs (if you have a doctor’s prescription for these items). FSAs can be used with any medical insurance. People with chronic illnesses like lupus would be well advised to take advantage of FSAs.

One potential downside is that if you do not use up the money you put into your FSA in a year, you lose the money at the plan year’s end. For example, if you decide to put $2,000 a year into your FSA, but at the end of the year, you spent $1,500 in qualified medical expenses, you lose the $500 you did not spend.



A health care insurance premium is an amount you must pay (usually monthly) for your insurance. Be careful when choosing a health care plan. A plan with lower premiums may not be the cheapest overall. Consider your out-of-pocket costs for drugs, doctor co-pays, and hospitalizations, and referral and pre-authorization hassles. Putting in that extra time to research these issues before deciding can make a substantial difference for you later.



A deductible is the amount of money you must pay before your insurance starts to pay for something. For example, suppose your yearly deductible is $500 for health care costs (such as x-rays, labs, and doctor visits) before your insurance kicks in. In that case, you must pay $500 out of pocket to the providers of services (doctor, hospital, x-ray office, laboratory, and so on) before your insurance begins to pay. Many lupus patients end up spending their full deductible every year. Health care costs for the rest of the year are usually much cheaper after the person reaches the deductible. After that happens, it is often to your advantage to get the medical care you need (such as hydroxychloroquine eye exams, x-rays, mammograms, prescription fills, doctor visits, etc.) in November and December instead of waiting until January or February.


Annual Out-of-Pocket Maximum Payments

Some people are fortunate to have a maximum annual out-of-pocket expense clause with their insurance. This can be a boon for someone with catastrophic health problems. For example, suppose you require many specialist visits, tests, and medicines or must be hospitalized or undergo an unexpected surgery. In that case, you may get to a point where all your medical care is taken care of after a specific dollar amount. If this happens, take advantage of it. Try to do as much as you can in November and December that you would usually do the following January or February (doctor visits, fill medications, medical tests, and so on).


Prior Authorization for Medications and Procedures

Prior authorizations also go by the terms “pre-certifications,” “pre-authorizations,” “pre-auths,” and “prior-auths.” Unfortunately, this is a fact in today’s medical care. A pre-certification is a process where your doctor must fill out paperwork to prove to your insurance company that a particular drug or procedure is required.

Doing pre-auths can be complex. Due to this complexity, it is common for pre-auths to be tied up somewhere in the system. The doctor’s office can’t always keep track of pre-auths after they are submitted to the insurance company. Whenever you need a pre-auth, call your pharmacy or x-ray office a couple of days later to see if the pre-auth went through. If not, contact the doctor’s office and talk to the pre-auth person again. Ask them nicely to investigate it for you. Keep doing this (follow through with the pre-auth person) until the process is complete.

Be kind to the pre-auth person. It can be stressful dealing with all the paperwork, insurance companies, pharmacies, x-ray offices, and patients (some of whom can be impatient and release their frustrations on the unfortunate pre-auth staff person).



COBRA stands for Consolidated OmniBus Reconciliation Act. This law allows people to keep their health insurance when they lose their job. It applies to companies with 20 or more employees and usually lasts 18 months. One of the worst things that can happen to lupus patients is losing their insurance. So, good health insurance should always be a priority. If you become one of the unfortunate Americans who lose their jobs, apply for COBRA as soon as possible to keep your insurance. At the same time, look for a new job. You will get the same group rate your employer paid and an additional administrative fee. Paying for your insurance can be expensive. However, being without it and potentially dealing with high health care costs if your lupus flares could be more expensive.


  1. 1. SLE patients should do everything possible to get the best health insurance.

    2. If you have the luxury of being able to choose among different health care plans, do not automatically choose the least expensive plan. What appears cheaper may eventually cost more. You may have more restrictive drug formularies with higher doctor and drug co-pays. Also, keeping up with referrals to see specialists, such as your rheumatologist, could be frustrating.

    3. If you have difficulty affording health care or do not have insurance, use the strategies described above under “What to Do If You Are Uninsured, Underinsured, or Cannot Afford Your Health Care.” Go to our Patient Resources page to find assistance programs and groups.

    4. If you lose your job and are disabled due to your SLE, apply for Social Security Disability immediately and get help from a lawyer specializing in Social Security.

    5. If you lose your job and health insurance, do everything you can to keep some insurance plan (COBRA or a private insurance plan).

Chapter Editor: Barbara Taylor, CPPM, CRHC Office Administrator, Arthritis and Pain Associates of Prince George’s County, Greenbelt, Maryland