In a study on Medicare patients, 20% of patients discharged from a hospital were readmitted within 30 days. Hospital readmissions cost patients and health insurance companies $15-$20 billion dollars per year. Plus, hospitalizations are a burden on Lupus Warriors and their families — costing time, energy, stress, and worry.

While it may seem like hospitals benefit from readmissions, steps have been taken to incentive hospitals to reduce repeat admissions. In 2012, the Hospital Readmission Reduction Program (HRRP) was established under the Affordable Care Act in an attempt to improve the quality of hospital care. It uses fines and reduced government funding as a punishment for high re-admission rates. And, HRRP encourages hospitals to get “better stats” by looking as measurable health outcomes. However, it might be ignoring other issues that affect both hospitals and their patients – especially people with lupus.

 

Lupus and Hospital Readmission

Because of the many comorbid symptoms of lupus – symptoms that occur alongside lupus – people with lupus often have to return to the hospital over and over again. About 10% of people with lupus end up in the hospital regularly, according to the Academic Health Science Center. Other sources list this percentage as high as 36% when including symptoms of lupus, including heart disease.

Additionally, people with lupus who are on immunosuppressant medications will often have to return to the hospital to fight infections related to their suppressed immune systems. This takes a toll on a person’s mental health, and leads to feelings of frustration, anxiety, and depression. Many patients and staff feel that all of this anguish can be prevented with adequate support in the hospital and at home.

Hospital Readmission Reduction Program

What causes hospital readmissions? What makes them so important? People return to the hospital for many reasons, but the reasons relevant to HRRP include the following:

• Lack of Education about treatment leading to the patient not being able or willing to stick to their treatment plan.
• Overworked Medical Workers who are tired and rushed, and end up missing and failing to treat key symptoms and conditions.
• Poor Transition of Care, where a patient is not properly prepared for moving to a new facility or to leave the hospital, leading to gaps in care or treatment.
• Poor Follow Up, where, after being discharged from the hospital, the patient is left without adequate check-ins or guidance.
• Worse Access to Services either due to distance, cost, or language and cultural barriers.

The HRRP considers readmission rates – the numbers of people who are hospitalized within 30 days of a previous hospitalization – to be a measure of the quality of a hospital’s care. It aims to use fines and lost funding as a “stick” to prevent hospitals from cutting corners.

As stated on its Medicare page, the HRRP mainly looks at readmission rates for:

• Acute Myocardial Infarctions and Heart Failure (Heart Attacks)
• Chronic Obstructive Pulmonary Disease (COPD, or Heart Disease)
• Pneumonia
• Coronary Artery Bypass Graft Surgery
• Elective Primary Total Hip Arthroplasty and/or Total Knee Arthroplasty

 

Readmission Rate Calculations

These statistics are entered into algorithms that determine the quality level of the hospital and any pricing changes or fines. The algorithms also look at other types of readmissions like unplanned, all-cause readmissions occurring within 30 days of the last hospitalization. A hospital can contest a ruling to the Centers for Medicare and Medicaid Services and get feedback, to make sure that things remain fair.

Although the HRRP addresses some of the problems that hospitals and patients face, it does not fit every situation. Rural areas have issues with access to care, and areas with higher rates of chronic diseases can skew the results.

Lupus and Hospital Readmission

One of the problems with how the readmission reduction program looks at the statistics is that some diseases, including systemic lupus erythematosus (SLE) manifest in a range of symptoms. The damage caused by SLE has the potential to effect every organ in the body and trigger readmissions.

Symptoms rise and fall in intensity as flares. Aside from diagnosis (which can itself be an ordeal) a person with SLE can find themselves returning to the hospital often. This happens for many different reasons not related to the quality of the hospital’s care or education.

 

Common Lupus Conditions that Lead to Readmission

Cardiovascular (Heart) disease is one of the biggest risk factors for hospital readmission, and people with lupus are at an increased risk of developing this condition.  Lupus damages cells in the heart or the arteries, which can lead to heart disease.

Additionally, some lupus medications (including Hydroxychloroquine) increase the risk of heart disease. It is very likely for someone with lupus to find themselves needing a hospitals’ help for heart disease, independently of a hospital’s quality of care.

Kidney disease is also a big risk factor for hospital readmission. Lupus commonly damages the kidneys leading to a particular form of lupus called lupus nephritis. Kidney damage requires management both at home and in a hospital and can require:

• medications
• medical procedures
• lifestyle changes
• specific diets

Still, the challenges and variability of kidney disease can still lead to readmissions.

The Results of the Hospital Readmission Program

The HRRP wasn’t perfect. For one thing, the program did not offer training and procedures on treating “the whole patient.” It also did not educate patients, tailor treatment plans to the patient’s lifestyle and means, and express the empathy needed to bring the complicated medical information home.

However, it did offer a huge amount of funding to hospitals willing to test out new strategies for reducing readmissions. That did seem to have an effect:

Early data in 2011 indicated that the rates for readmission, overall, fell from 19% to 17.5%. In real terms, that means an estimated 150,000 hospital readmissions were eliminated.

In general, the advantages and disadvantages of the current HRRP system have become clear.

 

Pros of HRRP

HRRP brought different care teams together and encouraged coordination between healthcare professionals. Collaboration between healthcare providers led to better strategies, better follow-up, and more confident, healthier patients.

HRRP increased awareness of the problems of hospital readmission to hospitals, insurers, and the public. This improved general conditions.

The program encouraged hospitals to pay attention to and measure the whole patient experience, not just the direct result of a hospital procedure or intervention. Because of this expanded viewpoint, hospitals were more motivated to assess, plan out, and create treatment plans that focus on the patient and their life. Caregivers and other support structures suddenly got a lot more attention.

Overall, HRRP encouraged more tailoring of treatment and monitoring of each patient. This has shifted healthcare (in America) away from the “fee-for-service” model and towards a value-based system.

Cons of HRRP

An only 1% drop in hospital readmission is just a drop in the ocean. And the program’s detractors aren’t sure that it’s worth it.

Indeed, critics note that there hasn’t been much of a change in length of stay and mortality. For pneumonia and heart attacks, it seemed, the length of time someone stays in the hospital and the rate of actual complications may be more important, overall, than the rate of readmission, and critics wonder if this should be measured instead.

The causes of readmission may not be related to the hospital’s quality of care.

After all, if someone comes to the hospital with heart failure, leaves, and then within a month falls at home and breaks their hip, that’s not the hospital’s fault. It could well just be random chance, or due to a common factor such as age or chronic illness. It may also actually be the hospital’s fault, as a result of some lack of education or care – there is no real way to know this from the data alone.

What is and isn’t considered a “readmission” might be arbitrary.

Some conditions related to a hospital’s quality of care might occur after the 30-31-day timeframe. Some of the potential readmissions are not classified as such, such as planned bypass surgery. Critics call for a better definition of what, exactly, a readmission is.

HRRP may actually hurt hospitals serving vulnerable populations.

The HRRP did not originally account for the fact that people with lower incomes or members of a sexual or racial minority are more vulnerable to health risks. These social determinants of health have serious challenges to proper care.

A hospital serving these communities might see more hospital readmissions because of their status of the patients. Under the HRRP these hospitals are at risk of receiving less funding.

HRRP might encourage longer hospitalizations, which can be traumatic.

Patients lose time, become stressed, and can have lowered mental health. The burdens of hospital stays can be psychological, physical, and financial. The goal, critics say, should be to reduce both admissions and stay length.

HRRP and Lupus

Readmission rates were found to be curtailed in lupus after a similar program focused on “post-discharge intervention.”  In the study, 132 hospitalizations were monitored over 8 months. 73 of these involved the nurses at the clinic reaching out to the patients afterwards. They offered education, guidance, and planning future visits. The 30-day readmission rate came out to 19% in the intervention group, compared to a non-intervention readmission rate of 29%. 

Overall, the HRRP is a work in progress, though, and is looking at ways to improve its policies.

 

Staying out of the Hospital: What You Can Do

Lupus has many co-morbid conditions, risks of infections, and symptoms. Hospitalization for lupus can appear to be difficult to avoid. But going into a hospital setting can be a major issue for people with lupus, costing time, complicating schedules, and traumatizing both patients and family. Plus, there is a risk of catching a disease from the hospital.

Adhering to diets and to other medical advice will help a great deal. Using the support systems available to you, including medical devices, support networks, and caretakers, can provide some of the care in the home that a hospital would otherwise provide. Take care of yourself as best you are able.

When you do have to go into the hospital, do your research before you go. Advocate for the care that you need, and listen to any medical instruction that will help you. Take notes.

It’s a hard fight, and some days are better than others. But, you’ve got this.

Pursuing disability benefits for lupus

People with a confirmed diagnosis of lupus qualify for disability benefits. But, due to the nature of lupus, it can be complicated. Your symptoms may change over time, flare up and remit. Certain symptoms (especially physical ones) carry more weight with the SSA than others (especially ‘invisible’ ones such as fatigue or depression). Rejections are common, but appeals are always possible.

You can apply online here with an English-language form, or schedule a time to apply in another
language.

One piece of advice is to hire a lawyer that specializes in applying for social security benefits. A lawyer helps:

• Ensure the application is returned within the 60-day timeframe from the SSA
• Include the relevant paperwork, statements, etc.
• Keep track of documents
• Create the application using standardized language

In addition, having a lawyer handling the application will also take on much of the emotional and physical burden of the application (and rejection) and give you the space to take care of yourself.

Social security lawyers typically also work on a “contingency” basis, which means that they are only paid when they win. Typically, they are not paid hourly. Instead, they receive a percentage of your backpay (usually about ¼) up to a hard limit of $6,000.

You can (and should) ask about these payment methods when selecting a lawyer.

What documents do I need to get disability benefits with lupus?

Speaking of documents, you will need quite a few of them, including:

• Your Birth Certificate (with your date and place of birth)
• Marriage and Divorce Certificates if you are applying as part of a married couple
• Any Education documentation, such as degrees or GEDs
• Social Security Numbers for children who are disabled and under 18, or under 22 and unmarried
• Any military service records or job history documents that work as proof of employment,
  including self-employment documentarian or pay stubs.
• Doctor information and medical records
• Bank info (so that they can directly deposit your checks into the account)
• Emergency contact information

The American Association of People with Disabilities (AADP) website names specific forms to look out
for:

• The Disability Report, Adult, FORM SSA-3368-BK
• The Work History Report, FORM SSA-3359-BK
• The Recent Medical Treatment Report, FORM HA-4631
• The Medications Report, FORM HA-4632
• The Hearing Request, FORM HA-4632

If you think this sounds ridiculously complicated – it is. According to the SSA website, they will help you with these forms. However, if you can, you may be better served by turning to a friend, family member, or caretaker that can help you document your symptoms. The lawyer can help you with this as well. In any case, the more information you can bring to the table, the better your chances at acceptance.

How much are the benefits?

Are disability benefits worth the trouble?

For adults who used to be in the workforce, “SSDI benefits are based on average lifetime earnings before disability.” The math they use to calculate this is complicated. Though you can get an idea of what you may be due by looking at your paid social security taxes here and using the calculator they provide here.

It is also slightly different for people who have been disabled since childhood or never entered the workforce at all due to their disability, but for the most part, according to the website “Disability Secrets:”

“Most SSDI recipients receive between $800 and $1,800 per month (the average for 2020 is $1,258).”

It also does not necessarily have to be your sole source of income – you can earn up to $1,260 additional wages (up to $2,110 or more per month if you are blind) without losing your benefits.

 

Are You Eligible?

How can you tell if you are eligible for disability benefits? According to the Disability Benefits Center, lupus is specifically listed as one of the diseases that can make you eligible for benefits. It also comes along with other eligible conditions. These include comorbidities such as arthritis, organ damage, and increased sensitivity to injury and infection.

The Blue Book, also known as the “Disability Evaluation Under Social Security” lists out what qualifies as a benefit-eligible disability and what doesn’t. You can learn more about whether you are eligible by accessing the “Blue Book” here.

Also, if you can prove quality of life changes such as persistent weight loss, fever, fatigue, or other symptoms, then you may still qualify.

 

Receiving benefits while employed

Being employed does not preclude you from receiving benefits. If you are currently working, you can still be eligible if you make less than $1,130 per month – the upper limit for being “Gainfully Employed.”

You also needed to have worked a certain amount, if you were able to work, and you must show that you will be unable to work (or find what the SSA defines as ‘gainful employment’) for a period of 12 months due to your lupus. Age and whether you receive other social security benefits is also factored into the decision to approve your claim.

Your employment history can go either way towards approval. Long employment history can work in your favor (the SSA sees this as a sign of reliability). But, being out of work can imply a dire need for benefits.
Spouses (including divorced spouses) and children (adopted, biological, stepchildren or even dependent
grandchildren) are potentially entitled to benefits as well.

Can you lose disability benefits?

Yes – but it isn’t easy. If you are “Gainfully Employed” or no longer considered disabled (after a review), you lose your benefits. Depending on your status, you may be reviewed at a period of 6 months to 7 years. However, the SSA does appear to recognize that some additional income might be needed and they do create incentives to re-enter the workforce.

If you are a student, you can earn up to $1900 a month without risking losing your eligibility.

Additionally, some plans allow you to work while receiving a reduced benefit. Up to $85 per month of your income is not counted against you. Then, every dollar you earn over that each month reduces your payout by $0.50 (50 cents).

You are allowed a trial period of nine months when returning to the workforce. It can be spread out over five years of part-time work. During this trial period, you receive your benefits. After the trial period, SSA assesses your need to see if the benefits are decreased or revoked.

 

Disability benefits vs. medical vocational benefits

If you are still able to work above the level that disability benefits would normally allow then a medical vocational benefit might be the way to go instead. In this case, all that you need to prove is that you can no longer work “in the capacity that you used to be able to work.” That could mean:

• reduced hours,
• forced to change jobs to something lower-paying due to your disability,
• or restrictions on your energy levels or movement that make working your job much more difficult.

Your medical conditions, job, age, work history, educational background, and skills are under consideration if you apply for medical vocational benefits.

The main difference between the two is that you can get a medical vocational allowance if you are working. Even if your condition is not severe enough to appear in the “Blue Book”. It covers a broader range of people as well.

If disability benefits seem out of reach, medical vocational benefits are a good second option.

 

Making benefits work for you

Payments will not start immediately. According to Everyday Health, it can take 3-5 months for your first check to be sent to you. After a potentially long wait to get approved, this additional waiting can seem interminable. Keep that in mind as you budget.

Find strategies to help lower your expenses while taking care of yourself. Health insurance is a big part of keeping your costs low, and you may be happy to know that you will automatically receive Medicare coverage after two years of received disability benefits (if you are not already covered).

Also, You can read more about getting help affording lupus medications here.

And, above all, continue not giving up – you are not alone in this fight!

What is a Grant?

A grant is a non-repayable package of money or other resources given by one party (in this case the National Institute of Health) to a nonprofit agency, educational institution, research institution, business, or individual. Grants are tailored to particular groups and uses. The money is transferred (or “awarded”) using a “funding award,” which is a contract that states how much money is being received and what terms and conditions the researcher or organization must follow (in addition to what they may have stated in their application.)

The NIH uses taxpayer money to fund ideas and projects that provide public health services, improve medical services, increase our knowledge of diseases, and determine new avenues for medicines. The NIH makes reports on its funded research available to the public, which you can see here.

How is NIH funding used?

The NIH funds research exploring hot new topics in the lupus and autoimmune field, such as the microbiome and biologics. They are also very interested in research that helps find the root of autoimmune diseases.

The Accelerating Medicines Partnership (AMP) is an NIH initiative first established in 2014. It works with pharmaceutical companies to encourage collaboration and speed up brainstorming and research progress. Specifically, the AMP focuses on particular gene expression, signaling, and biological pathways in lupus and rheumatoid arthritis. Determining these pathways will help find potential new drugs to treat lupus or even send it into remission. It is possible, and AMP helps move that research into clinical trials faster and, eventually, to the public.

The NIH is not the only funder for lupus research efforts, but it does support the efforts of nonprofit organizations such as the Lupus Research Alliance who then offer their own grants and awards. However, most of their grant funds come from the public, both through donations and fundraising.

Advocacy and NIH funding

The NIH has many priorities for improving the health of the American people, and limited funds. Several of their other priorities do help people with lupus. This includes research and initiatives that:

• fight the opioid epidemic
• improve access to medical care in rural areas
• work to destigmatize, better understand, and treat mental health and the effects of stress on the body

Advocacy groups such as the Lupus Foundation of America help keep lupus high enough on the NIH’s (and Congress, the organization that determines what funds the NIH receives) priority list to get grants and funding for lupus research. For example, the 2019 lupus advocacy summit pushed congress to support health-related agencies and specific research programs at other agencies (including the department of defense!)

You can read more about advocacy and lupus here.

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.

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