The CareMGMT App: Your New Companion for Managing Autoimmune Conditions  

We are thrilled to announce the launch of CareMGMT, Progentec’s innovative new app designed to empower you in managing your autoimmune condition. 

CareMGMT offers a wide array of new features and improvements tailored to support your health journey, including comprehensive symptom tracking, autoimmune-related research news and updates, personalized health insights, and a secure and supportive community board. Download now!

Screen Readers 

People with lupus sometimes have issues with their eyes and eyesight, either in the eye tissue itself or in the optic nerve. Even though millions of people around the world live with sight loss, the world can be tricky to navigate because it is built around full-color, 20-20 sight. A screen reader or text scanner can open up the world and make it more accessible for people who have issues with their sight. The wide range of screen readers available means that a person with lupus can find one that matches their needs and is compatible with their computer.

Most screen readers work by translating text on a screen into a speech synthesizer or braille display, or even magnify the text into a more readable form. A refreshable braille display translates the text on the screen into raised dots that can then be felt and read, then reset and reform as it ‘reads’ the next sentence. Often, this is a gel or plastic display, and will plug into the computer. 

Many screen readers also read the ‘alt text’ in images, often a description of the image or a few descriptive words. This allows people with impaired vision to still get the full benefit of article images. Some screen readers can replace the use of a mouse with verbal commands, keyboard inputs, or even head movements. Some screen readers are also capable of searching for strings of text on command or can be used alongside a word processor or dictation program to check spelling. Some can even read in multiple languages! Proofreading programs, portable word processors, and dictation programs are useful for writing even with issues reading, writing, or typing.

Screen readers range in price from free to $1200 and have a variety of features. There are even websites that enable text-to-speech for web content.

You can find a list of free screen readers you can download and install at Usability Geek. Notably, the program VoiceOver is already built into Apple products, so it’s already there, ready to use, and supports Safari, Opera, all built in Mac applications, and email and PDF reading. 

Hearing Aids

Hearing loss, though not usually talked about, is a symptom for around 30% of people with lupus. Lupus can cause a loss of hearing as the immune system attacks the auditory nerve and any of the other structures in the inner ear. There may be many more people with lupus who are not diagnosed, as it is often mistaken for age-related hearing loss, and can come with dizziness, vertigo, issues with balance, and headaches. There are many tools to help people with hearing loss. (The balance and vertigo issues are addressed in the next section!)

Hearing aids are speaker- or earbud-like attachments that amplify the sounds – turn the volume up on – sounds coming into the ear. Hearing loops work much the same way, and are worn around the shell of the ear.

Cochlear implants are surgically implanted microphone systems that turn sound into electrical impulses and communicate directly into the auditory nerve. If the auditory nerve is working well, then it can restore hearing.

In addition to these, there are assistive listening systems and devices that take advantage of captioning software and plug ins that transcribe audio files. There are also special phones that are made to work with hearing aids or are amplified so that certain types and pitches of sounds can be adjusted louder to match your hearing needs. Phones can come with captioning or utilize an intermediary that is either a live human or a text to speech synthesizer to make phone calls more accessible. 

Flashing alert devices like smoke detectors and carbon monoxide detectors are almost essential for safety, and alarm clocks can be modified to be vibrating or flashing. This article by Healthy Hearing recommends that, while there isn’t a store in particular that sells all of these items, many can be found with a simple google search, so go look for what you need. 

Mobility Aids

Long handled brushes, doorknob turners, sponges, drop guides, and holders can make a massive difference in quality of life for people with lupus. Adaptive reading aids that help with holding books, and pill organizers that help with remembering medication are also incredible tools for people with lupus. Lift chairs can help with standing up from a seated position with the use of a button. Many of these chairs are also good for posture adjustments, alleviating back problems.

As for stairs, stair lifts can be wonderful for handling difficult areas in the home.

Memory and Scheduling Aids

Smartphones and smart watches have many features that can help a person with lupus, including Schedule and reminder apps, timers and note applications. These features can be even more useful when dealing with cognitive challenges, fatigue, and brain fog. Many of these apps can be updated or activated with voice commands, which makes them even more accessible.  

Memory aids include reminder apps that use sound or vibrating cues to remind people of essential tasks. This can be as simple as a birthday or meeting reminder but can also be turned to help people with lupus work their way through complicated tasks. 

There are also mobility assistance applications specifically for smartphones that use the camera in the phone to track head movement and manipulate the phone in that way.

Other Tools of Use

You can find a list of interesting and useful tools at the Family Handyman here, that you might not have thought of. 

“Machine learning” is a term for a type of artificial intelligence or “AI” that adapts and changes how it behaves over time.

Usually, programs run in predictable ways, the same way every time, depending on what a human operator puts into them. Machine-learning allows the program to learn from its experiences and change over time, fine tuning itself into dealing with situations more efficiently and effectively.

There are many potential applications, even in cooking. But for people with SLE (systemic lupus erythematosus), machine learning may help unravel the mysteries of the disease:

• More accurately diagnose lupus and other autoimmune diseases
• Identify effective and personalized treatments
• Predict changes in disease activity and predict flares
  • You can read more about some advanced flare prediction tests here. 
• Determine lifestyle programs that provide the most benefit
• Identify triggers

Machine Learning and Lupus

The idea of machine learning was first conceptualized by Arthur Samuel in 1959, and refers to the ability of a machine to “think.” This thinking is the ability of an artificial intelligence program to analyze large amounts of complex data and adapt its programming to fit the data. This type of analysis of large, complex data sets is common in healthcare.

Machine learning allows a program to not only recognize patterns and trends and predict the results accurately, but to improve their accuracy over time as it “remembers” previous predictions. This could revolutionize medicine, which relies almost completely on trained human operators and is subject to human error.

Artificial intelligence and machine learning has the potential to make hospitals more efficient, more effective, and help more people. For some AIs, the goal is to have them act as part of the triage model, making sure that patients get the right diagnosis and are sent to the right doctors even before they speak to a nurse.

AI is very good at detecting and picking out patterns. This makes AI potentially very useful for classifying disease types, better than humans and current tests alone.

AI can also compare test results and behavior patterns quickly and more accurately than a human on their own, making the program better able to monitor changes in a person’s disease and condition. From this information, a treatment plan can be modified, adjusted, or – if it is working – remain the same, with a lot less guesswork.

AI can use various types of data for evaluation including:

• Genetic informaation
• Social media activity
• Lab tests and bloodwork
• Individual hospital readmission rates

AI can also help humans overcome assumptions, which plagues many people with lupus over their treatment journey.

“Horses, not Zebras.”

Doctors are taught to “listen for horses, not zebras.” That means to assume that the symptoms point to a common disease, not a rare one. Unfortunately, lupus is a “zebra” and is often misdiagnosed and ignored for years. To a machine, however, there are no horses or zebras – only information. An AI might be more likely to detect the constellation of signs and symptoms that hint at lupus – and less likely to ignore symptoms or make assumptions.

In a July 2020 report, particular value was placed on AI’s ability to diagnose and treat kidney-related symptoms of lupus, which are some of the most severe and life-threatening symptoms.

What is Biocreep?

“Biocreep” is when a treatment becomes, over time, worse at predicting or treating disease. All prediction techniques make errors, of course, but AIs used in medicine should have a limited rate of errors. Biocreep can be prevented with special algorithms and restrictions on the program that help guide the AI towards better results.

A Lupus Warrior’s Takeaway

Artificial Intelligence and machine learning is still a young field. There is a long way to go before it becomes a staple of medical practice. However, some limited AI is in active use, helping you navigate your treatment through online scheduling, online check ins, digitization, reminders for follow up appointments and immunization dates, and even determining the dose of a medication you take. While this is not at the level of machine learning, we are likely to see more adaptive AI in medicine in the future, to help take some of the workload off of the shoulders of medical professionals.

However, diagnosis should remain a team effort between a professional treatment team, a patient, and AI algorithms. Over-reliance on AIs can be dangerous, but machine learning reduces the mistakes that that will be made. In the near future the lupus diagnosis may be completely revolutionized. The goal of machine learning is not to replace doctors, but to enhance a lupus treatment team’s ability to take care of a patient.

Lupus Warriors know all too well how the COVID-19 pandemic has impacted their lives. New reports now show COVID infections are rising in many European countries. Biden officials are monitoring the increase in cases in the United Kingdom, where there has been a 36% increase over the past week. Meanwhile, the amount of molecular COVID tests shipped out by major manufacturers in the United States has decreased by more than 50% over the past month.

Experts warn that if this trend continues, and Congress fails to authorize new funds, then the United States will yet again find itself with too few COVID tests. Without sufficient testing, public health officials may not be able to discover new outbreaks and variants in a timely manner, and Lupus Warriors will be without testing access when they need it most.

The Impact of Insufficient Testing

Rapid falling demand for at-home tests is leading manufacturers to cut back. “If we get to a point where companies really are turning off lines or laying off people — are not making investments in the Covid test market — and we have another surge, then we will not be ready to go,” says Tom Inglesby, White House senior adviser for Covid response.

“We will be in a situation that is potentially much worse than what we had with Omicron.”

CEO of the Association of Public Health Laboratories, Scott Becker, states that the United States is repeating its mistakes from last summer when demand for testing drastically decreased and manufacturers slowed production. “It’s like we’ve learned absolutely nothing as a system during this pandemic,” says Becker.

Jennifer Nuzzo, a Johns Hopkins epidemiologist, states it is critical that the country maintains an ability to quickly catch new COVID outbreaks, especially now that certain mitigation measures like mask mandates have been scaled back.

“I am much more worried about our surveillance than I’ve ever been.”

Manufacturing and Production Timeline

“The lack of adequate manufacturing capacity leading into and at times during the Covid-19 pandemic, contributed to testing shortages,” says Susan Van Meter, executive director of AdvaMedDx.

Testing manufacturers have told administration officials that overall demand has plummeted so much that without existing investments, such as the government’s commitment to contract for 1 billion at-home tests, they would already be shutting down lines. The government has contracted for more than 700 million of the at-home tests to date, according to the White House.

The four-week rolling average of molecular tests shipped in the United States is 4.7 million, which is down from 10.8 million just one month ago, according to shipment registries of 13 diagnostic manufacturers.

As the consensus that the U.S. is again failing to adequately prepare for at-home testing needs continues to grow, more pressure continues to build on the administration and Congress. Private companies may not manufacture enough tests without certain “incentives or price assurances”, says William Morice, president of Mayo Clinic Laboratories. As the wait for funding and assistance continues, production timelines will have to wait as well.

LupusCorner Podcast

LupusCorner presents the LupusCorner podcast, a new way for Lupus Warriors to stay informed on research updates, symptom insights, guest interviews, and much more! Follow us on any of the following podcast channels, and stay up-to-date on the latest in lupus news!

Make sure to subscribe and follow! Be the first to listen to the newest episodes on relevant lupus topics!

This podcast was produced by LupusCorner. LupusCorner is a registered trademark of Progentec, a digital health and diagnostics company working to improve health outcomes for people living with autoimmune diseases. The podcast represents the opinions of LupusCorner and the guests to the show, and does not necessarily reflect the opinions of Progentec Diagnostics, Inc. or its management, employees or stakeholders. The content here is not intended to be, and should not be taken as medical advice and is for informational purposes only. Consult your healthcare professional for any medical questions. In no way does listening, reading, emailing or interacting on social media with our content establish a doctor-patient relationship.

It’s been an eventful month for our LupusCorner community! Your input, feedback, and participation goes a long way in allowing us to create content geared toward what you want to see. So keep participating and sharing your thoughts!

Instagram Survey Results

Every week we post a handful of surveys on our Instagram page, related to the topics of discussion during that time. Here are the results from those surveys:

(n=343) Stress affects everyone and it can cause major health changes, particularly for people with lupus.

(n=351) Acute (a single major event) and chronic (long term) stress are linked in research to many of the symptoms of lupus, including back pain, foot pain, joint pain, general pain throughout the body, insomnia, hives, migraines, and hair loss. It can also increase a person’s risk of infection, which is a huge danger for people with lupus who are already immunocompromised.

(n=339) Rheumatologists are experts when it comes to autoimmune diseases like lupus. But, that doesn’t mean that they understand all the challenges of being a Lupus Warrior.

(n=325) Rheumatologists are key members of the lupus treatment team and are often the clinician that will make a lupus diagnosis. But, studies have shown that the primary concerns often differ between lupus patients and their clinicians.

(n=335) Lupus Warriors sometimes face the need to change rheumatologists, especially if communication is lacking. This means that many people with lupus lack consistency in their lupus treatment.

(n=137) The foods you eat have a huge impact on the way you feel and your immune system. Eating a healthy diet is particularly important for people with lupus.

(n=154) Because changing hormone levels effect the immune system in a big way, menstruation cycles, also known as periods, can seriously effect lupus symptoms.

(n=126) Artificial Intelligence and machine learning is still a young field. There is a long way to go before it becomes a staple of medical practice. However, some limited AI is in active use, helping you navigate your treatment through online scheduling, online check ins, digitization, reminders for follow up appointments and immunization dates, and even determining the dose of a medication you take. Want to learn more? Click here.

This Months Top Comments

We encourage participation from our amazing lupus community, so we thought we’d share some of the top comments from this past month! Your stories, thoughts, and feelings can go a long way in helping other Lupus Warriors. Here are a few of the top comments from this months posts:

Weather & Climate

“I completely feel this. Recently moved out of Los Angeles and feel so much better in the cleaner air. My rheumatologist agreed that living in less polluted areas can help.” – @CoryMartinWrites

“I feel like I got hit by a freight train today. I have lupus and Sjogrens, and the changes in temperature, humidity and moisture always bothers me. Every inch of me hurts, my neuropathy is angry, my mouth hurts, I am exhausted and I can’t get warm.” – @Mamaboss21

PTSD & Stress

“This makes me so sad. It is like the trauma won’t end. Not only does it take a toll on your mental and emotional wellbeing but then it does on your health, most likely causing a life long ripple effect.” – @Lasenoraseries

“That we are survivors, and everyday is a new day, a new start, new life and full of surprises.” – @Helenajhelen

“It’s not what you see that poses the greatest problem, it’s the unseen… beneath the surface!! You would view me differently if you could see what I’m feeling deep inside!!” – @Alexanderlaurab

New Release: LupusCorner Podcast Episode 4

Want to know more about lupus-specific diets and supplements? Our new podcast episode is here to help!

Our team discuss lupus diets, benefits of a healthy lifestyle, and the viability of supplements for people with lupus. Stream on Spotify, Apple Podcasts, and anywhere else of your choosing!

Just click play below to stream!

Top Articles of the Month

Post-Traumatic Stress Disorder (PTSD) and Lupus

Traumatic events have been linked to changes in the immune system, inflammation, and immune cell function. Researchers are still trying to determine the exact changes that occur due to trauma and stress, but it is clear that post-traumatic stress disorder, also known as PTSD, causes people to be more vulnerable to developing autoimmune diseases such as systemic lupus erythematosus (SLE).

Read more.

Supplements and Lupus

People often try to add nutrients to their diet by taking them as supplements, separately from their food. Supplements can take the form of specially-formulated gummies, capsules of ground medicinal herbs or spices, or hard tablets. In theory, they can help people make sure that they are taking in enough nutrients, or some sort of substance with health benefits. However, supplements are not always absorbed properly by the body.

Read more.

Air Quality and Lupus: Take a Deep Breath

The air we breathe is linked to many different health issues, and it goes far beyond lung infections and asthma. According to the World Health Organization (WHO), an estimated 4.2 million premature deaths globally are linked to air quality.

Read more.

What’s Next? Upcoming Articles and Information

Articles to expect in the next month:

• Societal Expectations, Judgements, and Lupus
• Dry Eye, Eye Symptoms, and Lupus
• Stressors and Lupus: Management Techniques

What else to expect:

• LupusCorner Podcast: Episode 5
• LupusCorner Q&A Forum Survey
• New lupus-specific social media content

Follow us on Instagram, here! Come join our community and be the first to see new lupus content!

The right tool  makes all the difference. The adage holds for healthcare as well with more equipment being available for use at home than ever before.

According to experts, more and more people are purchasing medical equipment for personal use at home. A medical device is defined as “Any device intended to be used for medical purposes.” A medical device that is designed for use in a patient’s home, not a hospital setting, is a “home medical device.”

Although you may need a prescription in order to get health insurance to cover the costs, you can shop for and buy these items yourself. These devices are highly regulated and generally safe for use – they have to be, in order to be marketed to the public.

There is a wide range of medical equipment available, so what should you be looking into?

Note: Anything linked here is just for example purposes, not an endorsement.

Walking Aids

Lupus pain and fatigue can make it difficult to get around safely, but you do have to get around and move – both for the exercise and for normal life activities. Walkers, canes, crutches, and rollers can be essential for helping manage mobility. They can also help you avoid falls. Staircase lifts can also be useful for managing staircases.

While this equipment is very visible, it is also easy to use, and easy to take care of.

Screen Readers

Screen readers are useful pieces of hardware or software that many people don’t know about. As the name states, screen readers read text on the screen out loud for you. Some screen readers can even read the metadata of a site, including any description built into the images. They are very handy for people who are visually impaired. Also, they can be useful for people who find reading fatiguing or cannot look at their screens for long.

Less seriously, a screen reader can also be useful for people who simply absorb information better through hearing, rather than sight.

There are hundreds of screen readers available for many different operating systems, and prices range from free to expensive, depending on the version. Which one should you get?

When looking for screen readers, see if your insurance will cover it. Your operating system, the applications you want to use it for, any other displays that you use (such as a braille display), or how comfortable you are with the software commands are much more important. Ask your fellow Lupus Warriors in forums like our app here, and get some advice on what might be the right screen reader for you. There is no substitute for the experiences of others!

Bathroom and Stability Aids

Keeping clean and handling basic needs is essential for people with lupus. But, pain can interfere and make even daily hygiene a challenge.

Handles such as bars and poles can help you get in the right positions, and adjustable toilet seats can help with comfort and safety. Shower chairs and transfer benches can help you use less energy in the shower, clean lower areas of the body without as much movement, and protect you from a fall. Such things can both make bathroom hygiene activities easier and safer.

Respiratory Equipment

Lupus can come with respiratory (lung and upper airway) issues, and those don’t stop when you are home. Various respiratory medical equipment, such as nebulizers, oxygen concentrators, pulse oximeters, and others can help you breathe a little easier at home.

IV Poles

IV poles, including IV poles with wheels and even privacy screens, can help decrease dependence on the hospital setting. It can also make taking IV medications a lot less stressful when you do it in the comfort of your own home. Though, the administration of these medications will still be completed by someone trained in providing medical care.

How Does Medical Equipment Effect Your Quality of Life?

Home medical equipment can really help people with lupus take control of their care, reducing stress and improving quality of life. Not only do you have better access to some of the things that you need for your medical care, but your daily life can be made much less difficult. Improved access and comfort is very good for people with lupus, and the increase in independence can do wonders for your mental health. It also reduces your risk of exposure to potential hospital-transmitted diseases, and requires fewer scheduling issues to manage.

You should discuss with your medical team whether you can move some parts of your care to your own home, and what you need to get the job done.

How to Get Medical Equipment for Lupus?

You can buy some medical equipment on your own by ordering it on websites, but it is a good idea to talk to your healthcare providers first. They will give you a good idea of what types of items you will need, and, of course, how to use it. They can also recommend a good equipment provider. However, getting recommendations in writing from your healthcare provider also lets you potentially get some or all of the costs paid for by your health insurance.

Read more here about how to help afford expensive medications and equipment.

Living With Medical Equipment – Tips and Tricks

Having medical equipment in the home takes up space and can be a painful reminder of your illness. You may feel embarrassed to have such things, or to be seen walking around with assistance. It’s all right to feel this way and perfectly understandable – but here are some tips and tricks to lightening the mood!

Remember That It Helps

Medical equipment is helping you be you, and be comfortable being you. They are tools like any other, and we humans are tool-users. There is no shame in using what tools you have available to do better and feel better!

Decorate the Equipment and Make It Yours

Medical equipment looks bulky, plastic, and sterile – but it doesn’t have to! Make it personal! Stickers, paint, streamers, cloth coverings – do what makes you feel happy. As long as the decoration doesn’t interfere with the function of the medical equipment, you should feel free to make it feel like a real part of your home.

Share Experiences With Others

The internet makes it easier than ever to connect with other people who truly understand the challenges of life with lupus. Not only do you get good company and solidarity, you also get advice on how best to use home medical equipment. This lets you get the most out of it or make it comfortable for you.

Other apps include electronic notetakers, which can help you keep track of important information, mobile apps that link you to assistive technology, and many other useful items that can help you increase independence.

In all, though, you should do whatever you have to do in order to adapt your life to your needs and make things easier.

Patient-reported outcomes use surveys to measure lupus. Mostly, these surveys identify the physical symptoms of lupus. But also helps researchers and doctors identify the true concerns of people with lupus. It is important to prioritize how a Lupus Warrior is feeling and their health priorities in addition to more easily measured physical symptoms of lupus.

You can read more about how lupus patient priorities can differ from clinicians here.

There are many different types of surveys including LupusPRO, Lupus Impact Tracker (LIT), and Body Image Lupus Screen (BILS). Each one looking at different aspects of the lupus experience. The surveys can be specific to systemic lupus erythematosis (SLE) or more general. Survey questions reflect the lupus experience in a standardized way. That is key.

The patient reported outcomes in these surveys have been compared against known clinical measurement methods. This includes SELENA-SLEDAI and the SLICC/ACR damage index, and appear to match up well. They have also been tested in focus groups representing multiple ethnicities, genders, and languages, and they to be a good cross-cultural measure of lupus.

You can read more about lupus measurement and predicting symptoms here.

What is LupusPRO?

LupusPRO is a 49-question survey that looks at health-related quality of life. One of the few that directly evaluates brain fog, pain, pregnancy concerns, fatigue, lupus medications and side effects. It also asks questions about less tangible topics like:

• satisfaction with care
• thoughts about body image
• feelings about work
• personal desires and goals
• social support
• coping with lupus

Using gender-neutral language, the test seeks to be a universal and respectful tool for collecting patient-reported outcomes.

With some modifications, LupusPRO has proven to be reliable and able to encompass the lupus experiences of other ethnicities and genders.

What is the value of patient-reported outcomes?

Clinicians and researchers use patient-reported outcomes. They measure both the symptoms of lupus and the personal impact of the autoimmune disease. Researchers see how people with lupus really feel about their lives with these surveys.

Research using the SLE Severity Diary (SSD) and the SLE Impact Questionnaire (SIQ) identified areas of disease impact. The most frequently reported issues related to chores and housework.

This helps doctors and researchers see the beyond the organ damage and clinical conditions that come with lupus, to the person with lupus themselves. Patient-reported outcomes make your priorities heard.

When people with lupus, clinicians, and researchers have the same priorities, then both research and treatment becomes more efficient. Patient-reported outcomes are a very powerful tool and a good part of every Lupus Warrior’s arsenal!

Life insurance companies pay the family or dependents of the deceased a sum of money on the person’s death. This money can help give the bereaved the financial breathing room that they need to grieve and recover from the loss of a loved one. It can also afford:

• funeral costs
• debts
• basic everyday needs

Because people with lupus can have a lot of medical bills and a higher risk of fatal injuries and emergencies, life insurance is a way to take care of their family – just in case. However, those same increased health risks can make life insurance companies reluctant to approve policies. 

There are 3 types of life insurance:

1. Term
   • These plans offer guaranteed level premiums (amount paid monthly) for a given term of 10, 20, or 30 years
   • Can be valuable if you have a young child and you want to ensure they can afford college, etc.
2. Permanent – whole life
   • Permanent plans are designed to be in effect the entire life, even from childhood.
   • Whole life policies offer premiums that do not rise over time.
   • These policies build cash value that you can borrow against
3. Permanent – universal
   • Designed for the entire life, but with more flexibility
   • You can adjust the size of premiums, benefits, and accumulation based on what’s in the contract

How do I get life insurance?

Many life insurance companies are willing to consider people with lupus. Unfortunately, Lupus Warriors with additional complications are likely to encounter difficulty being approved for a policy. 

It can be particularly challenging to receive a policy if you have organ damage to the:

• heart
• lungs 
• central nervous system
• kidneys

The best advice is to get a life insurance plan sooner – before organ damage occurs – rather than later. Keeping yourself in good health – through exercise, diet, avoiding tobacco use, and taking your medications regularly – can help make it more likely that you will be approved for life insurance.

What life insurance options are available?

Some companies offer specific life insurance plans for people with lupus. Or, they will offer their usual plan at a higher rate or with a lower payout. In some cases, if a person with lupus dies from natural causes, the payout will be delayed or spread out over the course of several years. Accidents pay out normally to the family. If you are particularly healthy, or your lupus is in remission, you may be able to get the standard plans.

Using a rate calculator or an independent agent can help you find the best life insurance for you.

Life insurance questions to consider

1. I get life insurance through work. Do I need a personal plan?
   • Group policies offered to employers are a way to receive life insurance without a medical exam. But, they often provide a smaller cash payout.
   • If you change jobs, you may not be able to take your coverage with you
2. Will my premiums change over time?
   • Depends on the type of plan. Whole life plans have guaranteed premiums as long as the policy does not lapse. Term plans have a fixed premium for a given period, but often require an increase after that time.
3. How are benefits paid?
   • The structure can be adjusted based on your family and goals. They can be paid as either one lump-sum payout or issues in monthly installments. There is even an option to pay the benefits into a retirement account (IRA).

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.