Federal Assistance

Affording Medications for Lupus: Programs & Assistance

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The pain and fatigue of lupus doesn’t just take a toll on your body. Affording medications can hurt your wallet.

Out-of-pocket costs for medications and uncovered portions of clinical visits can be a major headache — and cause some people to forego potential treatments altogether. While research and development of new medications is exciting, are the medications actually valuable if they are unaffordable to the people that need them? Rather than focus on this question, perhaps it’s better to ask this question: What tools exist to help with affording medications and medical treatments?

Studies have confirmed that financial strain negatively impacts health. One 2-year long study looked at the interaction of financial strain and the loss of personal control, which caused depression, impaired functioning, and decreased health.

While it can be overwhelming and psychologically tiring to manage the healthcare system (but hopefully these strategies may help!), it is important to attempt to minimize stress. A 2003 study (cited 64 times) found that psychological stress, in particular the daily stress of social duties and social relationships, may be associated with lupus flares. These tips may not help you explain what it’s like to have lupus to friends or acquaintances, but hopefully it can help you save a few spoons!

1. Talk to your doctor

The first tip for affording medications is one that you can and should do every time you visit your clinician. Bringing up your financial concerns with your doctor, nurses, patient advocates, and/or pharmacists is useful as they may know of assistance programs or discount cards.

Generic drugs

Your doctor may be able to prescribe generic drugs, as opposed to name brand drugs. Generic drugs are copies of brand name drugs in dosage form, safety, strength, route of administration, quality, performance characteristics and intended use. Generic medications are also approved by the FDA.

Why are generics cheaper? Drug companies have to get patents on new drugs. Those patents last for 20 years and give the companies exclusive rights to make and sell a specific drug. When the patents expire, generic drug companies can make chemically identical medications (as evaluated by the FDA). Then generic companies can sell the drugs at a considerably cheaper price. R&D costs for new medications are incredibly high, but generic drug companies do not have these costs. This is how generic drugs can be effective, approved medications at a cheaper price.

Insurance formularies

Additionally, the electronic medical record (EMR) your doctor likely uses to order medications may have additional information about the drugs covered by your insurance. Different insurance companies work with pharmacy benefits managers to create a formulary, or lists of approved medications. By working with your doctor, it may be possible to find treatment methods that are covered!

Drug samples

Samples: Not just at Costco and Sam’s Club! Drug representatives will drop off samples of medications at doctor’s offices. Samples are provided for free. While this may not be a longterm solution, it may help! This can be a great option to help with affording medications that are new to the treatment plan.

2. Prescription assistance programs (PAP)

Regardless of your insurance (or if you receive any pharmacy benefits) you are able to use prescription assistance programs. These programs can sound too-good-to-be-true — but they are valid programs that aim to help lower prescription drug costs for all people. Essentially, PAPs or drug cards work by providing you a coupon number for specific medications. They then promote smart shopping by letting you see the price of your medication, with the discount, at local pharmacies.

Two examples of this are:

  1. FreeDrugCard.us
    • Ranked #1 by RxResource.com
    • Sponsored by a non-profit
    • Works at 68,000 national and regional pharmacies
  2. GoodRx.com
    • Start-up company
    • Provides a mobile app as well as website
    • Compare prices on every FDA-approved med at 70,000 US pharmacies – shows lowest prices
    • Lists additional saving tips including patient assistance programs

3. Pharmaceutical assistance programs

Pharmaceutical companies offer medication-specific programs that may help with affording medications. Often, these programs require enrollment and there are some criteria for eligibility. These programs can vary, and may not be available for every medications.

Finding these programs is easier than ever thanks to tools like GoodRx (see above) and NeedyMeds.org. On NeedyMeds, you can simply search for a given drug name and it will display all the available assistance programs. It also displays some eligibility information on the same webpage so you won’t have to spend hours and hours visiting pages all over the web!

Benlysta has a financial support program set up by GlaxoSmithKline, the maker of the drug. This program provides contact information to help sort out insurance coverage questions as well as to see if you may be eligible for additional support.

With Benlysta, GSK also offers a $0 Co-Pay Program. Approved individuals will have 100% of out-of-pocket costs covered for Benlysta up to $9,000 each year (this just covers the medication and not any doctors visits or medication administration costs). This program is for people with commercial insurance (NOT Medicare or Medicaid) that doesn’t cover Benlysta or those who are uninsured. You can learn more about the program here.

4. Diagnosis-specific patient assistance

NeedyMeds also provides diagnosis-specific assistance programs. They have multiple tiers such a Lupus Assistance and Autoimmune Disease Assistance. This will display national and state level grants or funding sources that may support some or all of your health care.

Some of the groups that showed up in the search are foundations, such as the HealthWell Foundation and Lupus Foundation of America, while others are more specific and may also support your needs.

5. State pharmaceutical assistance programs

Some states in the USA offer help with drug plan premiums and drug costs. The eligibility requirements vary by state, so you’ll need to check for your specific location.

This tool is put together by Medicare.gov but reveals all the information for the programs in each state.

State Pharmaceutical Assistance Programs search

6. Medicare Extra Help program

Extra Help is a Medicare and Social Security program to help people with limited income and resources afford prescription drugs. If you qualify, you may pay no more than $3.30 for generic medications and $8.25 for each brand name drug in 2017.

Check to see if you are eligible — or if you automatically qualify.

7. Organizations and Associations

There are entire organizations dedicated to supporting people with chronic and/or rare diseases. And others that are dedicated to helping with affording medications.

  1. National Organization for Rare Disorders (NORD)
    • NORD offers patient assistance through RareCare and other programs
    • Medication-specific, diagnosis-specific, and clinical-trail programs here
  2. BenefitsCheckUp.org
    • BenefitsCheckUp can help you find available programs that you are not using.
    • They offer an easily searchable benefits database for medications, health care, income assistance, tax relief, and more!
  3. PAN Foundation FundFinder
    • The PAN Foundation’s mission is help provide financial assistance to underinsured patients
    • Fundfinder is a tool that makes finding and monitoring disease funds easier


Updated: June 2019

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