Health Insurance for Lupus Patients: Affordable Health Care
Lupus, an Expensive and Potentially Disabling Disease
Dealing with a chronic disorder that requires frequent doctor visits, taking medications, and getting regular studies (such as labs and x-rays) can become an expensive hardship for many. Yearly medical costs for a person with mild systemic lupus erythematosus (SLE) range from $9,000 to $15,000. For moderate to severe disease, this jumps to $22,000 to $83,000. Due to these high costs, SLE patients are twice as likely to not take their medications, leading to increased lupus flares, disease activity, and hospitalizations.
Yet these numbers do not really tell the whole story. This is only the direct cost of medical treatment to pay for doctors, nurses, lab tests, x-rays, medical equipment, and hospital costs. The other part of the equation is indirect costs, including the loss of wages from time missed from work. A 2016 Swedish study showed that this averaged $23,000 per year per patient. This is three times greater than the number we quoted in the first edition of this book in 2014.
Although many people with SLE have excellent jobs with good sick-day benefits and health benefits requiring low out-of-pocket payments, others are not so fortunate. We have seen the cost of co-pays for drugs, doctor visits, and tests greatly increase over the past decade. Patient deductibles (what the patient must pay out of pocket before insurance coverage) are becoming unaffordable for many. Others are less fortunate and have no benefits, having to pay everything out of pocket or relying 100% on government assistance.
In addition, although most people with SLE do very well, live long, normal lives, and work with minimal problems, some become disabled and cannot continue working. Becoming disabled, losing your job, and dealing with the bureaucracy and paperwork necessary to get assistance can be overwhelming. This chapter provides information about financial issues, insurance, and affording medications.
We must begin this chapter with the reality that the healthcare climate in the world constantly changes. For example, since the first edition of this book (2014), we have seen The Affordable Care Act greatly increase healthcare coverage in the U.S. Another major example is the repeal of the right to an abortion by the landmark decision by the U.S. Supreme Court in Dobbs v. Jackson. This has caused great concern among rheumatologists regarding the health of our pregnant lupus patients. Our SLE patients are already at substantial risk for pregnancy complications.
However, much of this advice will be usable for many years. If you are struggling financially or are wrestling with the prospects of disability, the tools in these chapters can at least guide you on some steps you can take.
Because health care systems can be dramatically different from country to country, this chapter mainly refers to the United States.
This is a “living” online chapter of “The Lupus Encyclopedia, edition 2.” We can make changes over time as they occur. If you have any comments or advice for others, please comment at the end. If something has changed with the times, please mention that so we can make appropriate changes.
Healthcare Insurance: Private and Public
There are many ways people get their healthcare in the United States. This section discusses some of those aspects and gives advice about the choices in what healthcare they can have and how to deal effectively with their situation.
Healthcare benefits can be divided into large categories. Some people have private insurance healthcare provided by their employers or from buying it individually. Some people get their healthcare through government-run programs such as Medicare and Medicaid. Lastly, the uninsured must pay for everything out of pocket. If you fall into this last category, we provide helpful advice.
Private Healthcare Insurance
There are two major types of private healthcare insurance: group plans and individual plans. Most Americans with private healthcare insurance are covered under group health insurance plans offered by their employers. Most of the time, the employees have little to say about which healthcare plan they get or the terms of the plan.
The larger the company you work for, the greater your chances of better healthcare benefits. This is because a large company can buy many policies for a large group of people. By having many healthy individuals in a plan, it can be advantageous to your employer to bargain for better benefits at reduced costs.
On the other hand, smaller companies tend to 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 greater out-of-pocket costs (like 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. In this situation, the federal employee has the choice of paying different costs out of pocket for different plans. We offer advice in this section on these choices because what may appear to be the least expensive healthcare plan choice may be more costly overall.
The second major way of getting private insurance is through an individual health insurance plan. This is paid for completely by an individual. This may need to be done by people with jobs with no group insurance or by self-employed individuals. Because an individual does not have the luxury of the risks of healthcare being spread out among many people (as with group health insurance), individual plans cost more and offer fewer benefits.
A major improvement since the first edition of this book is that The Affordable Care Act prohibits insurance companies from denying coverage to individuals with preexisting conditions (such as lupus). Before it became effective on January 1, 2014, it was difficult for lupus patients to obtain individual health plans.
Types of Private Medical Plans
Several types of private medical plans are available. As mentioned above, you may not have a choice in which one you get, but sometimes (as with some government employees and some larger companies), you have a choice. The major insurance plans include Health Maintenance Organizations (HMOs), Point-of-Service (POS) plans, Preferred Provider Organizations (PPOs), High Deductible Health Plans (HDHP), Exclusive Provider Organization Plans (EPO), and Indemnity Plans.
Health Maintenance Organization (HMO). HMOs require you to have a primary care provider, called a PCP for short (such as a family practice or an internal medicine physician), who acts as a “gatekeeper.” You are required to see your PCP for all initial medical care. When a specialist is needed, such as a rheumatologist for SLE, you must obtain a written or electronic referral from the PCP. The referral may be good for only one visit or may be good for multiple visits. The referral has an expiration date. If you have not used all of your approved visits by the expiration date, you will need to obtain a new referral for that specialist.
There are advantages to an HMO. It is often one of the least expensive forms of private healthcare insurance since it figures that the PCP (working as a “gatekeeper”) can decrease overall healthcare costs by limiting the number of specialist visits. Usually, the total premium (amount of money you pay for the plan) is often one of the lowest. The co-pays (shortened form of co-payments) that the individual pays for each doctor’s visit are usually lower than in other plans. In fact, 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.
There are downsides to HMOs. One downside is that it can be a hardship when someone must see a specialist frequently (such as someone with SLE needing to see a rheumatologist frequently), plus having to get a referral for each visit. This often forces members to see their PCPs more regularly than they normally would, just 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). It is unclear if this resulted in worse outcomes or not.
In addition, most HMOs stipulate that it is the individual’s responsibility to keep up referrals to ensure they are up to date. A referral to a specialist usually has a timed limit and expires after a certain date. It is up to the individual to make sure that the referral is good for the appointment time scheduled with the specialist. The specialist is not allowed (by their contract with the HMO) to see the patient unless that individual has an up-to-date referral.
One example of this being problematic is when an appointment with a specialist needs to be rescheduled. Rescheduling occurs for many reasons, including weather closures of the office, the patient being unable to make the appointment or the unavailability of the specialist. It is up to the individual to get a new referral if that new appointment occurs after the expiration date of the initial referral. 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 referral dating. It is usually too much work for a doctor’s office to keep track of this.
In addition, patients participating in HMOs must see specialists who are members of the HMO. This limits a patient’s choices in who they can see.
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 of this is that the result of the study usually goes to the PCP rather than the ordering specialist. 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 of the referral system. The referral system can be exceedingly difficult to maneuver. For example, you may have to see your PCP more often than you thought just to keep up with your referrals. It can be quite challenging to keep up with the dates of expiration on the referrals and the number of appointments allowed on each referral.
An HMO can be a good, low-cost alternative for people who rarely see specialists. However, it can quickly become a huge 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) once a year 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 potential downside of an HMO occurs in situations where 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 not in your HMO, you may not be covered and face large medical bills. However, some HMOs offer emergency benefits to cover these situations.
Cost is also not the only issue. The referral system sometimes inserts a wedge in the patient-doctor relationship. It is human nature to blame the doctor (specialist) and their staff for problems when referrals prevent the patient from being able to see the specialist or when the patient ends up paying out of pocket because of expired referrals.
If you are the type of person who is incredibly well organized, is extremely comfortable with the HMO system, and does not get upset when you need to get new up-to-date referrals when required, then an HMO may be the best, most affordable plan for you. An HMO may also be an excellent choice if your lupus is mild, under good control, and if you do not see many doctors other than your rheumatologist or ophthalmologist (for hydroxychloroquine eye tests) and primary care doctor. People with limited incomes are disadvantaged and may have to choose an HMO over more costly, flexible plans, like PPOs.
High-Deductible Health Plans (HDHP). An HDHP plan has high out-of-pocket costs for the covered individual yet low upfront premium costs (defined below). Due to their lower prices, they have become more popular recently among employers. In 2022, the U.S. Internal Revenue Service defines an HDHP as a plan with at least a $1,400 or higher deductible for an individual and $2,800 or more for a family. HDHPs cannot have deductibles above $7,050 for an individual or $14,100 for a family (in 2022).
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 written prescription from a doctor). Some employers are generous enough to even place money into the HSA of their employees.
An HDHP can be best for young patients with few medical problems who do not foresee high medical costs in the future. However, this does not apply to many SLE patients and is often not a desirable choice.
Point-of-Service Plan (POS). A POS is a hybrid sort of HMO plan. You can utilize doctors and specialists who participate in the plan using referrals as outlined above. However, you can also choose to use doctors and specialists outside the plan (called out-of-network providers). When you use doctors in the plan’s network, you can expect to pay lower co-pays to see those doctors. However, you also usually need an up-to-date referral when you visit a specialist in the plan. 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 the traditional HMO because they provide greater flexibility regarding the doctors you can see. This is a good option for people who want some of the financial benefits of an HMO when visiting specialists in the plan while providing the flexibility to see specialists outside the plan. This type of plan can be especially good if you have seen a rheumatologist you like for a long time and then need to change insurance plans. Suppose you switch to a POS plan your rheumatologist does not belong to. In that case, it allows you to continue your long-term patient-physician relationship.
Preferred Provider Organization (PPO). PPOs are the most common type of 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 who must see specialists. Most PPOs have provisions where you can also see doctors who are not part of the PPO plan. 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% of the costs of a specialist who does not. This gives you added flexibility in seeing doctors both in and outside the plan, realizing that it is more expensive for the latter.
Since SLE patients often need to see many specialists and their primary care doctor, PPOs are often one of the best plans. Not having to get referrals every time you visit a specialist eliminates a major hurdle in obtaining the best medical care.
Exclusive Provider Organization Plan (EPO). EPOs are a group of doctors, clinics, and hospitals within one health care network. Participants can only receive care from these network doctors and locations. There are little to no extra costs to the patient. However, this is balanced by little to no flexibility. Patients do not need referrals, which is an advantage. 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 sort of plan does not have to see any doctor, and referrals are not required.
There may be 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. If there is a high deductible, the yearly premium paid is usually lower than those of other plan types. For example, a plan may pay 80% of healthcare costs after the annual deductible is met, leaving the member to pay the additional 20%. Most plans also usually have a maximum yearly amount that the policyholder must pay for medical costs. Once that full 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 pre-authorization (often shortened to “pre-auth”) is a process where a doctor must fill out paperwork to prove to an insurance company that a test or procedure is needed. Pre-auths attempt to decrease the number of unnecessary expensive medical procedures performed.
Government Insurance Programs
By far, the largest two government healthcare programs are Medicare and Medicaid. There are other government healthcare systems, including the Indian Health Service, Military Health System, TRICARE (the civilian part of the Military Health System), the State Children’s Health Insurance Program (SCHIP), and the Veteran’s Health Administration (VA). We will not discuss these other systems but encourage you to use these 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 programs like 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 other programs such as Medicaid). All states offer SCHIP with federal support, but each runs its plan differently than others. If you have children and cannot afford healthcare, you can call 1-877-KIDS-NOW (1-877-543-7669) to learn more about the program and enroll your children.
Medicare. Medicare is run by the U.S. 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, B, C, and D.
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 being in a skilled nursing facility, up to a hundred-day visit, if it occurs after a three-night hospitalization, and if skilled nursing services are required because the person was in the hospital.
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 (like 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, DME equipment including braces and home oxygen equipment.
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, the person is subjected to a monetary penalty if they are not enrolled in Part B. This means that you must enroll in Part B within a certain 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 2022, the monthly premium was $170.10 and higher (depending upon your income). The deductible was $233 per year. After the necessary out-of-pocket yearly deductible is met, Medicare pays 80% of these medical expenses. The participant pays the remaining 20%. Some people (but not all) must pay a monthly premium for their 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. MAPs can be HMO, PPO, or other plan types, as described earlier. 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 your out-of-pocket expenses, and it simplifies things with “all-in-one coverage.”
You also must still pay your Medicare Part B premiums, which are automatically deducted from your Social Security checks. You pay little to no extra money for premiums for MAPs. You usually must pay co-pays for services such as doctor visits. However, once you reach your yearly out-of-pocket limit, the MAP pays for 100% of your medical costs. This does not include drugs and some extra benefits.
However, these advantages come at the cost of the MAP requiring you to only see doctors, clinics, and hospitals in the MAP’s network. Pre-authorizations are often required for specialized care. This can be problematic for lupus patients who may need to see many specialists. Obtaining referrals to see these doctors (including your rheumatologist) can be difficult. Also, the pre-authorization process required for medical procedures can be daunting. Then if 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. Make sure to do your homework before applying for one. Check with other people (friends, family) and research internet resources before buying into a sales pitch.
I (Don Thomas, MD) refer my patients to my office manager (Barb Taylor, editor of this chapter). She knows first-hand which insurances people have the most problems with and which provide the best medical coverage. In other words, ask the office manager of your rheumatologist what they recommend for your area. Especially find out which insurances to avoid.
While some plans can be excellent, many people become disillusioned. They may find that they have more difficulty getting the medical care that they need due to the restrictions in their plan. They may be limited in which doctors they can see, which medical services they can get, and which medicines they can take.
There are several potential advantages of Medicare Advantage Plans. They can sometimes be cheaper overall than traditional Medicare, and they may offer services not offered by traditional Medicare, such as free wellness exams with your PCP, eyeglasses, and hearing aids. 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 had better health outcomes than those with traditional Medicare. These differences were greatest among non-White minorities.
These advantages must be weighed carefully against their potential disadvantages, the increased restrictions on which doctors, hospitals, and services will be covered. In addition, many people are surprised that their overall costs for their doctors and tests end up being even more than what they would have been if they had kept their traditional Medicare.
Note that you cannot have both a MAP and Medigap (discussed later).
Note: If you have chosen a Medicare Advantage Plan: Reminder: You No longer have Traditional Medicare. You will still have your Red White and Blue Medicare Card(please keep this card but it is tucked in your wallet), but remember when you go to the doctor or medical facility, you need to provide your New Medicare Advantage Insurance Card to every provider.
Medicare Part D (Prescription Drug Plans). Anyone eligible for either Medicare Part A or Part B is eligible for Medicare Part D. Since traditional Medicare (Parts A and B) does not cover medications outside of a doctor’s office, this plan is specifically designed to help cover the costs of prescription medicines.
This is a voluntary plan, requiring that the person applies for the plan through private insurance companies. The plans vary a lot from company to company. Therefore, it is important 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 medicines they will cover and drugs they will not. If a plan sounds good on the surface, but the medication you require for your health is not in its formulary, it would not be a desirable choice for you.
One disadvantage of Medicare Part D is the “donut hole” gap. In 2022, once an individual reaches a limit of $4,430 for prescription drugs, they are responsible for 25% of the costs of medicines. Subsequently, after spending a total of $7,050 on medications, the “donut hole” ends. The person then enters the “Catastrophic Coverage” portion of the plan, where the drug costs go down significantly.
A major problem with the donut hole is that some lupus patients take large numbers of medications that can easily 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). This can be an attractive alternative to Medicare Part C. It is used along with traditional Medicare and covers out-of-pocket costs and allows you a wider choice of health care providers that you can see compared to Medicare Part C.
Medigap plans may be purchased, usually by paying a monthly premium. They pay for healthcare services not paid for by Medicare. For example, Medicare recipients must pay for 20% of their healthcare benefits after they meet their yearly deductible. Many Medigap policies will cover these 20% payments and the Medicare deductible payments the individual is responsible for. As of 2021 if you are new to choosing a Medigap plan, the Medigap plans will NOT cover the Medicare deductible. You are responsible to pay your healthcare professional the Medicare deductible. These plans can be helpful, especially for people with high medical costs who can afford to pay the premiums for the plans.
Medigap cannot be used with the Medicare Advantage Plans of Medicare Part C. You can either use a MAP by itself or traditional Medicare along with Medigap.
Medicaid. Medicaid is a welfare program for low-income people to help with healthcare 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 may be eligible. You can participate in both Medicare and Medicaid.
What to Do If You Are Uninsured, Underinsured, or Cannot Afford Your Healthcare
Being without health insurance or not having enough money for healthcare can be catastrophic for lupus patients. While the best solution is to keep searching for a decent job with good health benefits, other options are available to help get through such a crisis. In addition, some people have insurance but still have difficulty affording their healthcare. Some of these tips may be useful in those situations as well. 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 important 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 are eligible to extend your health insurance through COBRA (discussed later in this chapter). This program allows you to continue your health insurance after losing your job.
Be honest and forthcoming about not having money for healthcare. Doctors will not know how to help you financially if they do not know your troubles. When making any of the requests listed below, be honest about your tough financial situation. Your doctors’ offices can try to help in some ways if they know what a rough time you are having. Find out at your doctor’s office if there is an office manager or practice manager. The office manager is the person you want to speak to when making special financial arrangements. Keep your visits with your doctor strictly focused on your medical condition.
However, some doctors who are in solo practice may not have an office manager. In those cases, speak to the doctor.
Ask for discounts from doctors’ offices and hospitals. Most doctors’ offices and hospitals will give discounts to people who must pay out of pocket and have no insurance. The best person to speak to is the office manager of the practice. Let them know your financial problem and ask for discounted rates. Your doctor’s office usually cannot help reducing your office visit co-pays. The doctor must collect a co-pay from you as part of the arrangement with your insurance plan.
The same goes for your hospital. Make an appointment with the billing department manager or a hospital social worker to help. With a large hospital, be prepared to show your financial hardship. Go prepared with information such as family income, bills (utilities), and proof of state residency. It can help you get the help that you need.
Set up an interest-free payment plan with your doctor or hospital. If you do owe money, the worst thing you can do is to ignore the situation and not pay. Even if you can pay a small amount each month, it is better than paying nothing. Make an appointment with the office manager or a hospital social worker to explain your situation. See if you can get the amount of money you owe reduced and work out a payment plan you can afford. Never agree to a plan that is beyond your budget. It is better to pay a smaller amount monthly(payments must be received every 30 days to stay current with your doctor) and stand behind your word to make the payments than to agree to a plan you cannot afford. A doctor’s office would rather you pay a little bit at a time over an extended amount of time instead of paying little to none of what you owe. In addition, if you work out a plan ahead of time, it saves the doctor’s office money because the office staff will not have to keep calling you on the phone, will 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. Again, doctors understand people are going through tough times, and they would much rather see someone be honest and cooperate from the start instead of ignoring the problem.
Ask your doctor if generics are available in place of expensive brand-name medicines. Doctors often prescribe newer brand-name medicines that do not have generic equivalents because they may be better than older medicines for several reasons. For example, a more recent version of therapy may be a slow-release, once-a-day form, while the older generic form may have to be taken three to four times a day. It is much easier for a patient to comply with a once-a-day medicine.
If you are prescribed an expensive brand-name drug, ask your doctor if there is a cheaper, generic medicine that can take its place. Realize that this may be difficult for your physician to do. For example, there may be no way to know exactly how to convert a person from one medicine in a class of drugs to a completely different medication. It may take trial and error on your doctor’s part to try this. There also may be no possible generic equivalent for some medicines. If a drug has no generic equivalents, ask if your doctor has medication samples or any coupons (or use online coupons like GoodRX). If you do not want to bother the doctor, ask the receptionist, nurse, or medical assistant for samples. We do not mind if patients call the office and ask for samples, as long as 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 in which you can participate. These are usually based on household income, so you may need to send in proof of income. Almost all brand-name medicines have easy-to-find websites using the name of the drug. For example, Benlysta’s website is www.benlysta.com, and Saphnelo’s is www.saphnelo.com. Many brand-name medicines have coupons available on their websites.
Apply for patient drug assistance programs. Some agencies can potentially help you with prescription medications. 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 not listed, please mention this in the Comments section of that page so we can add them to the list.
Ask for medicines covered in $4 and $10 generic drug lists. Many pharmacies have low-cost generic drug lists. Get a copy of this list from each pharmacy in your area and keep them with you. Check the lists for the types of medicines you are taking. If alternative drugs on the list could replace a more expensive drug, ask your doctor if this is possible. Take the lists with you to doctor appointments, and if you are prescribed a new medicine, ask your doctor to check to see if they can put you on medication from the list.
Ask your government representatives for help. There are government agencies that can provide healthcare support. This can vary among cities, counties, and states. Contact your local city councilperson, mayor’s office, state-level representative and senator, and federal-level representative and 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 that offer help in your area that you may have never known existed.
Contact your closest lupus advocacy group as well as other patient advocacy groups. They usually have a list of local and national organizations available to help with the healthcare of people who do not have insurance or the financial means to get adequate healthcare. 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, immunizations, pelvic exams, mammograms, cholesterol levels, blood pressure checks, glucose (sugar) checks, and ECGs. You can get information for clinics in your area by contacting the Health Resources and Services Administration at 877-464-4772. Additional low-cost healthcare clinics not run by the federal government may also be available in your community. 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 there is an available clinic close to where you live.
Contact a teaching hospital rheumatology clinic. Some rheumatology clinics at large teaching hospitals may be able to see patients who have no insurance. This may be especially true if they have active research studies on lupus. Volunteering to participate in a lupus research study is a good way to get your foot in the door of a lupus clinic at a teaching hospital. Call the clinic, be straightforward, and explain that you have no money or insurance and desperately need healthcare for your lupus. Ask them if they can provide any care and ask them if they have any research studies from which you could potentially 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 levels, blood counts, chemistry tests (kidney, sugar, and liver function tests), blood pressure, 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 only order necessary tests. SLE is a complex disease, and following it completely involves many tests, some of which are expensive (e.g., anti-ds DNA, C3 complement and C4 complement levels). Ask your doctor to order only the bare necessities at each visit. The absolute minimum requirements, in Dr. Thomas’ 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).
Ask x-ray and blood drawing offices for a special discount and compare prices. When you need to get x-rays and labs, call all the offices available in your area. Ask to speak to the office manager or billing department. Explain over the telephone that you will be paying out of pocket, do not have very much money, and really need help. Ask for a discounted rate and promise to pay before you get the test done with cash. Tell them exactly what tests you need. Call up several different offices and then choose the one that gives you the best rate.
If your rheumatologist does lab tests inside the office, ask the office manager how much the office would charge. Do not be ashamed to say that you need financial help to get a low rate. 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 ahead of time 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, etc.) are not centralized. Because of this, unfortunately, it is common to have to repeat tests because the doctors do not have the results of each other’s tests. 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 filed into your chart; if you call too soon for a test result, it can just be more difficult 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. Keep these copies well organized in your own personal home records. If you need to see another doctor, and you think they may need the result, just photocopy it, and take it in with you to your next visit. Also, always carry your records and results with you. You may avoid having unnecessary tests done.
Do research on resources on transportation to doctors’ offices and hospitals. If you cannot get to the doctor due to not having transportation, then that can be a huge obstacle to your medical care. It is essential that you investigate your area to find out what resources are available. Contact your local elected representatives (town councilperson, state-level and federal-level senators and representatives), senior citizens’ center, free medical clinic, and hospital social worker’s office to find out what services are available. If you have Medicaid, there are often free transportation services available, 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 a budget and stay on it. Before buying anything, ask yourself, “Is this something I really need, or something that I just want?” Be honest. If it is not something you really need, skip it.
Eat healthily and cheaply. Eating healthy will help your lupus and decrease healthcare costs in the end. Eating healthy food is less expensive than eating unhealthily (think fast food, chips, and soda pop). There is growing evidence that you may be able to 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 8-ounce servings daily. Learn to “shop the perimeter” of the store (near the store’s walls) where fresh fruits and vegetables, dairy, and fresh meats are located. The central aisles have more expensive (and less healthy) canned goods, and bagged foods are sold. Large bags of frozen vegetables can be quite inexpensive. Buy substantial amounts of chicken on sale. Prepare it broiled or baked (not fried) and remove the skin before eating it. Do not eat junk food and do not eat out (which is usually more expensive than preparing food yourself). Learn to buy in bulk, look for sales, and learn to use coupons. Buy generic brands instead of the more expensive brand names. Learn to eat smaller portions. Americans, unfortunately, are used to eating oversized servings, which greatly contributes to the obesity epidemic.
Exercise. Exercise can be free (brisk walking on a track or in your neighborhood, free arthritis class exercise groups, seniors’ groups, or doing them yourself at home). 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 healthcare costs. You do not have to have an expensive membership at a health club to exercise. Check out what is available in your community. One of our favorite cartoons (by Randy Glasbergen), which we have hanging up in our 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. One of the most frustrating things for doctors is to have patients sitting in front of them who complain about having to pay money for their medicines, doctor visits, and other healthcare costs, yet they smell like a chimney from all the cigarettes that they smoke. Smoking is expensive. Plus, it worsens your health, increasing your healthcare costs. It is a losing battle if you keep smoking. Smoking increases the severity of SLE, keeps Plaquenil (hydroxychloroquine) from working, and causes early heart attacks and strokes, in addition to all the other horrible things it does (cancer, emphysema, etc.).
Just do the math on how much money you would save if you stopped smoking. However, do not stop there. Your future healthcare costs would be lower if you quit smoking, your lupus got under better control, and you did not develop heart disease, strokes, or cancer earlier. 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. Throughout “The Lupus Encyclopedia,” there are many recommendations on how to treat some conditions on your own without using medications. Put these suggestions to use. This includes gastroesophageal reflux disease, insomnia, fatigue, and joint pain. Many people can adequately control many of these problems by eating, exercising, eliminating bad lifestyle habits, and doing the non-drug recommendations discussed. We are not trying to minimize the effects and complications of lupus. It is common for people to want to take a little pill for something instead of doing the harder work of trying to control things on their own. Even if you cannot get rid of your problems by following all the suggestions, you can often decrease their severity enough so that less expensive medications can be used to help you out.
Consider working a part-time job that has good health insurance. There are companies that 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 being a teacher’s aide, may also provide good benefits, such as healthcare insurance.
If you are disabled and cannot work due to SLE, apply for disability ASAP. Although it is better for your health and finances to keep working a job (even part-time) with good health benefits, it is best to apply for disability as soon as possible if you cannot work. Consider getting 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 very little assets, apply for SSI, which is 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 Healthcare Considerations
Flexible Spending Accounts (FSA)
An FSA is a financial account that people can set up through their employers, allowing them to save money for medical expenses. An advantage of Flexible Spending Accounts is that the money is not subject to income payroll taxes. The amount is deducted from people’s gross income, therefore lowering the total amount of income tax they are required to pay out of their paychecks. They may use that money to pay for medical expenses such as doctors’ co-pays, prescription costs, medical devices, and even over-the-counter medications (if they have a prescription from a doctor for the items). Dental and eye expenses can be covered as well. FSAs can be used with any type of medical insurance. People with chronic illnesses such as lupus would be well advised to take advantage of this plan.
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 end of the plan year. 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 that you did not spend. Suppose you pay $2,000 yearly for your healthcare (medical, dental, eyes, and over-the-counter medications) and put $2,000 a year into an FSA. In that case, it can 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.
Premiums
A healthcare insurance premium is an amount you must pay (usually monthly) for your insurance. Be careful when choosing a healthcare plan. A plan with lower premiums may not be the cheapest overall. This can be apparent after you factor in your out-of-pocket costs for the medications, doctor co-pays, hospitalization costs, and the hassles you may have to go through to get referrals and pre-authorizations for various aspects of your healthcare. Putting in that extra time to research these issues before deciding can make a substantial difference for you later.
Deductibles
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 healthcare costs (such as your 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 service (such as the doctor, hospital, x-ray office, laboratory, etc.) before your insurance begins to pay. Many lupus patients end up spending their full deductible every year. Healthcare 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 tests done that you need (such as your hydroxychloroquine eye exams, x-rays, mammogram, etc.). In November and December, try to do as much as you can that you would normally do the following January (doctor visits, fill medications, get tests done, etc.).
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 godsend for catastrophic health problems. For example, suppose you are unfortunate and have a year requiring many specialist visits, tests, medicines, hospitalizations, or an unexpected surgery. If you have this clause as part of your insurance, you may get to a point where all your medical care is taken care of after a certain dollar amount. If this happens, take advantage of it. In November and December, try to do as much as you can that you would normally do the following January (doctor visits, fill medications, get tests done, etc.).
Prior Authorization for Medications and Procedures
Prior authorizations also go by the terms “pre-authorizations,” and “pre-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 medication or procedure is required before your insurance will pay for it.
Doing pre-auths can be quite a complex process. Due to this complexity, it is common for pre-auths to be tied up somewhere in the system. It is virtually impossible for the doctor’s office to keep track of pre-auths after they are submitted to the insurance company. Whenever you ask for 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. Also, always be kind to the pre-auth person. It can be incredibly 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 poor pre-auth staff person).
COBRA
COBRA stands for Consolidated OmniBus Reconciliation Act. This law allows people to keep their health insurance when they lose their jobs. It applies to companies with twenty or more employees and usually lasts eighteen months. One of the worst things that can happen to lupus patients is to lose their insurance, so keeping good health insurance should always be a priority. If you become one of the unfortunate Americans who lose their jobs, make sure to apply for COBRA as soon as possible to keep your insurance while you look for a new job. You will get the same group rate your employer paid and an additional administrative fee. Paying for your own insurance can be quite costly. However, being without it and potentially dealing with high healthcare costs if your lupus flares could be more expensive.
KEY POINTS TO REMEMBER
- People with SLE need to do everything possible to get the best healthcare insurance possible.
- If you have the luxury of being able to choose among different healthcare plans, do not automatically choose the least expensive plan. What appears cheaper may cost you more eventually with higher doctor co-pays, more expensive medicine co-pays, and more restrictive medication formularies, as well as the headaches that can come with keeping up with referrals to see specialists.
- If you have difficulty affording your healthcare or do not have insurance, use the strategies under the heading “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.
- 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.
- If you have private short-term or long-term disability insurance, apply for disability immediately if you become disabled. You can take advantage of both your private insurance and Social Security at the same time.
- If you lose your job and health insurance, do everything you can to keep some sort of insurance plan (COBRA or a private insurance plan).