Regular clinic visits, laboratory tests, and prescription medications are essential for battling lupus and for living your best life. But, the costs can add up quickly. Healthcare (at least in the US) is expensive and the accompanying bills can be daunting.

Lupus Warriors spend $12,643 per year on healthcare alone according to a 2008 study shared by the Lupus Foundation of America. Direct costs included costs for hospitalizations, emergency department services, physician visits, outpatient surgical procedures, dialysis, and medications.

Though this can vary depending on your individual symptoms and needs, it’s easy to become overwhelmed by costs.

Having that debt can seriously damage your credit score, hinder your life, and get you harassed by creditors — and you don’t need that pain on top of what you already have. Fortunately, financial assistance programs can help with the burden.

Health Insurance and Financial Assistance

Health insurance is a very good option, and you can read more about what that is and how to get it here. 

It can take some research to find the right one, but you should try to get health insurance if you are able, especially if you live in America. You may be able to get health insurance through your job, your spouse, or through other means. No matter how you get your insurance, it is very important to make sure that your medications, specialists, and facilities are covered. 

Starting in 2014, you can also get financial aid to purchase health insurance. The qualifications are the same for Medicaid, which is paid for by your taxes. However, since Medicaid may not be the right plan for all Lupus warriors, financial aid can help pay for a plan that covers what you need.

However, health insurance is not the only option to help pay for your medical needs.

Disability and Government Assistance

Disability bonuses, also known simply as disability, is money that the government distributes to people with qualifying health conditions. If you are unable to work due to lupus, you still are able to have a roof over your head, food on your table, and contribute to the household needs. However, it can be a challenge to be approved to receive benefits.

In order to see if you are eligible, the Social Services Administration – the government department that handles the funds – requires information on your current level of functioning. They solicit info on your employment status ,the severity of your condition, the nature of your condition, and whether you can continue working in any capacity. They also have a list of “approvable” disabilities. Lupus is included on that list, as well as some common comorbidities such as kidney damage and arthritic pain. Here is the specific quote from Disability-benefits-help.org:

“To meet the lupus listing you must have at least two body systems or organs and are affected by the disease and you must additionally experience other signs and symptoms on a consistent basis, like fatigue, fever, or weight loss.”

You will need to “prove” this. Your doctor can help you here by sharing their notes and verifying your symptoms. A disability lawyer can help figure out what evidence you need, help direct it through the process, and help you with the appeal.

The pathway to receive these benefits can be long. It can sometimes take 3-5 appeals to go through. Plus, filling out detailed questionnaires can be a pain. 

But the end result, the disability benefits, can help reduce your financial burden. You can try out a free evaluation here.

What About Clinical Trials for Financial Assistance?

Participating in clinical trials for lupus is a very good option for many reasons. Clinical trials expand our knowledge on lupus and can help develop treatments. Additionally, they often provide compensation or pay for medications and therapies. 

Clinical trials.gov provides information on clinical trials, including trials that are recruiting participants. And, Lupus.org has a search engine that specifically helps match you to clinical trials via a questionnaire.

The main disadvantage of clinical trials is that you may or may not be eligible due to other medications or therapies, or may have a reaction to whatever they are trialing. The limited duration of clinical trials can also be a problem. However, it can be a good way to fund therapies, and you might get a new and effective medication regimen out of the deal.

Payment Plans

Some medical centers offer payment plans to make up the difference between what your insurance covers and what you need to pay. Many smaller payments can be more manageable.

Payment plans are best used for major, one-off crises or surgeries. A more constant use of services will mean that the amount that you need to pay will increase over time due to interest. So, a payment plan might not be the best choice for those cases. If you have a very active form of lupus, insurance plans with higher up-front costs or deductibles may still save you money in the long run.

Other Types of Financial Aid

Financial aid isn’t just for your medical bills – it can also include:

• Assistance with transportation and getting around. Transportation can be key to getting the care that you need. Whether you live in a rural area or in the city, transportation support can take away a cost and a burden associated with medical care.
• Assistance with rent, mortgage, and utility bills or with finding stable housing within your ability to pay. Keeping a temperature-controlled roof over your head can help keep your symptoms at bay, and reducing bills reduces your stress level, too.
• Assistance with financial planning, to help make what money you do have available last and get the most bang for each buck.

Using Crowdfunding for Financial Assistance

If you are having trouble getting insurance or disability funding, then crowdfunding may help. With the rise of the internet, getting help from a vast worldwide community is doable. But, you will have to make your case.

You should always have a goal for crowdfunding. Usually, with crowdfunding, the goal is to get the services that you need until you can make things more sustainable.

Sharing your need for a specific, achievable goal, such as a surgery or procedure that will improve your life, is a great motivator for fundraising sites. Or, for a specific amount of money that will fund medications for a specific amount of time, hopefully with a resolution at the end (your insurance starting up, perhaps). 

Make sure to be clear about what the money will go towards. On some of these sites, using this money for things other than your medical bills is frowned upon. On other sites it is more expected. Familiarize yourself with other funding options and the norms of the online community before posting for best results.

A few options for crowdfunding your medical costs include:

• Rally Hope 
• Gofundme 
• Plumfund 

Other Financial Assistance Options

Ready to take the first step in getting financial assistance for lupus? Here are a few links to other organizations that provide support:

• Veterans of the US Military can get financial aid through Veterans Affairs or through other private organizations
• Needymeds also lists programs for people with lupus
• Patient Help Network offers patient assistance programs that cover medications as long as they cost over $100 a month
• USA.gov a government site, offers benefits, grants, and loans to qualified people. You can view their site here as well as links to Healthcare.gov’s site, which can help you find an insurance plan that works for you.
• Some nonprofit charities, including Catholic Charities, Modest Needs and foundations such as Healthwell and PAN offer assistance and funding to people with chronic diseases
• Various charities around the country can grant funds for people with chronic diseases. Healthwell has a fund specifically for Lupus Warriors that pays for up to $15,000 in copay costs and covers 52 lupus medications. The fund focuses on lower income families who are below or near the poverty level. This does require that you have an insurance plan already. That insurance plan will pay for most of your costs, and the fund will cover the rest. This will allow you to pay nothing out of pocket for your essential medications
• The Assistance Fund offers funds for lupus that can be applied for here. They claim to cover “all FDA-approved” medications for lupus
• Quest Diagnostics pays for laboratory testing, either via payment plans, financial assistance, or by adjusting the charges
• Temporary Assistance for Needy Families, run by Health and Human Services, is financial assistance that aims to help families get back on their feet after a set back and “achieve self-sufficiency.” Though not appropriate for everyone’s situation, this can help a family reeling from a sudden crisis or a diagnosis.

Identifying and Applying for Financial Assistance

The right treatments, the right treatment team, and the right price can make all the difference. But, it can take some work to find and apply for the appropriate programs for you.

Looking to get started? Here are some tips:

• Create a spreadsheet of different financial programs that may be beneficial (include any due dates for applications)
• Save copies of your applications and look for follow-up information when you submit
  • Get a point-of-contact whenever possible
• Some lawyers and organizations support patients through the support process
• Ask your clinicians about local programs. They can also help get you enrolled.

The Lupus Foundation of America and the Lupus Research Alliance share additional insights on financial services. The National Institutes of Health (NIH) also has additional resources for medical treatment assistance.

Try whatever options you can, and see if it can free up some of your energy for healing.

From this basic premise, health insurance gets convoluted quickly. Plans can offer access to particular doctors and/or hospital systems, various cost structures to you as a patient, various payment amounts to health systems, different total risk exposure to the member, and add-ons including medication support, dental, and advanced rehab services. These are all important factors for Lupus Warriors to consider when selecting health insurance.

Comparing insurance plans isn’t exactly a fun Saturday night — but it can help you get the healthcare services you need without the risk of full financial exposure for care. Unfortunately, as many recent news stories have shared, even people with health insurance may receive bills for services provided by out-of-network providers or services that are not covered.

Speak with your lupus treatment team about insurance and pricing. There may be ways for them to help minimize cost risks, including getting prior authorizations.

Understanding Health Insurance

If you have a full-time job, you likely already have insurance options through your employer. Talk to your HR department and learn as much as possible about what the employee health plan covers. Depending on the offerings, there may be multiple tiers offered as different price points.

Health insurance options across insurers are broken down by metal tier. The metal name is simply a way to describe the percentage range that the insurance company will pay. The 4 metals from lowest tier to highest tier are:

• Bronze
• Silver
• Gold
• Platinum

(NOTE: There is also a catastrophic plan tier. These plans are only available to people under 30 years old OR people who qualify for a hardship exemption)

Typically, the higher the metal tier, the greater percentage of costs the insurance company will pay on a bill. However, the higher metal tiers are also more expensive for you in monthly premiums.

The bolded portion above is crucial to consider when selecting a plan to make sure that you are not wasting money (paying for too high plan and not using the care) or leaving yourself vulnerable to large medical bills (paying for too low a plan).

One additional factor: If you are under 26 years old, you are able to remain on your parent’s health insurance plan as part of the 2010 Affordable Care Act (also known as Obamacare). This can be a great option if you are a student or are involved with part-time work and do not receive health benefits.

Health Insurance Terms to Know

3 Terms relating to payments 

1. Premiums
   • What you pay to the insurance company every month to be part of a plan. You pay this whether you use health services or not.
   • Higher premiums often mean lower deductibles and higher co-insurance amounts
   • For example: platinum plans may be expensive every month, but the deductible will be lower, meaning that insurance will begin paying sooner than a bronze plan and the insurance company would cover a larger percentage of the subsequent bills.
2. Co-insurance (displayed as a percentage)
   • After you have paid your deductible, the insurance company begins paying. However, they often pay at a co-insurance rate. This means that the insurance company does not pay 100% of all costs after the deductible but some other agreed upon amount.
   • For example: Take a $2000 deductible and a 20% co-insurance amount. After you have paid $2000 out of pocket (plus your monthly premiums) the insurance company will begin paying. On a $10,000 hospital bill, you would pay 20% ($2,000) and insurance would pay 80% ($8,000). (Note: this is not true if you surpass your out-of-pocket maximum)
3. Co-pays
   • After you have hit your deductible, you may still be required to pay a fixed amount ($20 for example) for some health services. These are paid at the time of the visit.
   • If you have a co-pay but have not hit your deductible, you pay the full allowable amount of the service rather than the co-pay amount.

2 terms relating to risk exposure

1. Deductible
   • The amount of money you have to pay for covered health services out-of-pocket before the insurance begins to pay.
   • The amount you have paid into your deductible resets every year
2. Out-of-pocket maximum/limit
   • As the name suggests, this is the maximum you can pay for covered health services in a given year. After you have hit this threshold, insurance pays for 100% of costs for covered benefits for the remained of the plan year.

Check out the HealthCare.Gov terms glossary to learn more about the relevant health insurance terms. It can make comparing health insurance plans much easier!

Public Insurance Options

The US government offers its own insurance options, Medicaid and Medicare. As the main source of insurance in the United States is via the employer, these plans are designed to provide support to those who cannot work or have retired.

Medicaid is available to individuals or families with low income or disabilities. It pays health care providers directly and covers the services and doctors that people with lupus need. However, some services or locations might not take Medicaid. This is because Medicaid negotiates lower payments for services than other types of insurance. It can be harder to get visits with clinicians that take Medicaid and you may have to wait longer between visits. Studies have found that public options like Medicaid are effective and economical as “associated out-of-pocket spending is far lower.”

Medicare is similar to Medicaid, but it is available for older Americans age 65 and up, or for people who have had a qualified disability for more than two years. It includes vision, hearing, and dental plans, as well as somewhat more advanced access to specialists and doctors than Medicaid. There are two versions:

• Medicare part A does is paid out of taxes and does not require a monthly payment. However, it provides less coverage and has some restrictions on services. The services that people with lupus need as they age sometimes are not fully covered by this.
• Medicare part B requires a monthly premium or payment but provides greater coverage and services. For some people with lupus, the monthly costs can be enough to make this option not-viable.

The Children’s Health Insurance Program, or CHIP, is an alternative for children and teenagers. For children with lupus who don’t have insurance through their parents, or whose families don’t qualify for Medicaid, this option provides free or low-cost insurance and covers their medical needs.

Buying a Health Insurance Plan

If you don’t qualify for a government plan, and you don’t have a plan through your employer, then finding the right insurance plan for you will require some additional legwork. There are many different plans, and the Affordable Care Act included a health insurance marketplace that can help narrow down those plans to the one that works best for you. The Marketplace acts as a database, a search bar, and also provides information on payment plans and services.

Pricing is developed by actuaries who forecast long-term costs for the company. To make these assessments, there are plans can only be purchased during one time frame during the year. This is called the Open Enrollment Period.

The open enrollment period often occurs in November and December. During this timeframe, you can switch health plans. After this period, you are not able to switch unless you qualify for a special exemption (which can include changing jobs, getting married, etc.)

Doing the Research

Find health insurance that works for you AND understand the benefits that you are due. In many plans, rehabilitation services including massage and physical therapy may be covered.

When you understand what is covered, you can work with your treatment team to make choices that fit your health and economic needs. If the process of looking into insurance is boring, try to reframe it in your mind. You aren’t just looking for for insurance, you are looking for the smart choices that will give you access to the essential health services for you to feel your best (without leaving you at financial risk).

The right plan for you is out there: Lupus.org has resources for you to help you find the right plan for you. If you have health insurance but need a little more financial assistance, check out our article on disability benefits and financial aid.