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No one should have to feel ill day after day. Living with a chronic illness is a constant struggle, and managing your disease can mean missing out on important events with friends and family. Added to this is the stress of high out-of-pocket medical expenses, which can mean foregoing the treatment you need. Yet, no matter your situation, know that you are not alone.
There are many sources of relief, from financial assistance for chronic illnesses to a range of in-person and online support groups. Here, we explore a variety of resources for chronic illnesses that provide the help you need so you can get back to living your best life.
The high costs of chronic illness
Managing a chronic illness can be expensive, and often, insurance plans will not cover the total cost of treatment. Take a look at a few statistics you should know about the cost of chronic illnesses and the financial impact it has on lives:
- According to the Centers for Disease Control, six in ten U.S. adults have at least one chronic disease.
- The National Institutes of Health (NIH) estimates that autoimmune diseases collectively affect 5-8% of the U.S. population, with women being affected three times more often than men.
- The American Diabetes Association (ADA) has determined that the cost of insulin is low or not working well. সহজ বাংলা: রক্তে চিনি বেশি থাকার রোগ।" data-rx-term="diabetes" data-rx-definition="Diabetes is a condition where blood sugar stays too high because insulin is low or not working well. সহজ বাংলা: রক্তে চিনি বেশি থাকার রোগ।">diabetes in 2022 was $412.9 billion, which includes $306.6 billion in direct medical costs and $106.3 billion in indirect expenses. Between 2017 and 2022, the direct medical costs tied to diabetes increased by 7%.
- Many people in America who suffer from chronic illnesses cannot afford their medication. As a result, up to 25% of them skip doses or have not filled their prescriptions in the past year due to the high out-of-pocket cost.
- An estimated 41% of people, or approximately 100 million adults, currently face medical debt, with about 12% owing $10,000 or more.
The emotional challenges of having a chronic illness
Living with a chronic illness can have a significant impact on a person’s emotions and physical well-being. Managing a long-term health condition’s daily challenges and uncertainty can lead to different emotional responses.
- Anxiety can arise from the unpredictability of symptoms and the impact they have on daily life.
- Depression can set in when people struggle to deal with their illness and the limitations it places on their personal and professional lives.
- The physical symptoms amplify the emotional impact and how the illness can disrupt a person’s sense of identity and normalcy.
Coping with a chronic illness requires a person to adjust to new emotions as they go through feelings of grief for their former life and acceptance of their new reality. Support networks, mental health resources, and taking care of oneself are essential to address the emotional challenges that come with chronic illnesses.
Financial assistance resources for chronic illness
Whether you or your loved one is living with Lyme disease, multiple sclerosis, or another chronic illness, know that there are ways to find the help you need. The following resources help those with a chronic disease find relief.
Nonprofit organizations and charities that provide financial assistance
There are many charities that offer help, including financial assistance for autoimmune diseases, genetic disorders, and other chronic illnesses. Some are disease-specific, while other programs will help with any qualifying medical expense. Each patient assistance program has their own application process and set of eligibility criteria. Below are just a few charities that offer help:
- Hope Charities provides counseling to connect patients with the treatment they need. It also offers a chronic disease fund assistance program up to $1,000 to help pay medical bills.
- If you need help with prescription costs or insurance copays, the National Organization for Rare Disorders may partially or fully cover the cost. They currently provide financial assistance to patients with one of 52 chronic diseases.
- Another charity that supplements health insurance, the HealthWell Foundation provides financial assistance for premiums and deductibles, copays, pediatric treatment costs, and treatment-related travel costs.
- The Coalition Against Pediatric Pain offers financial assistance to families and children dealing with chronic illnesses. The organization helps patients secure medical equipment and therapy not covered by insurance.
- Accessia Health offers four types of financial assistance—travel, medical expenses, insurance premiums, and medication copays. Travel expenses limited to $500.
Health care and treatment support programs
Participating in a clinical research trial may be a great option, depending on the nature of your trial and your specific illness. Before participating in any trial, make sure to talk with your doctor. Below is a list of resources for finding chronic illness research trials:
- CenterWatch manages a database for volunteer clinical trials, with opportunities around the world.
- Supported by the US National Library of Medicine, ClinicalTrials.gov is another database of publicly and privately funded trials.
- The National Institute of Health Clinical Center offers a variety of trials at their research hospital in Maryland.
- ResearchMatch helps to connect interested volunteers with research studies and clinical trials across the country.
Prescription assistance programs
Over the period between January 2022 and January 2023, a total of 4,200 drug products saw an increase in their prices, according to the U.S. Department of Health and Human Services. On average, the drugs became 15.2 percent more expensive, which translates to an increase of $590 per drug product.
But there are a few assistance programs that can help lessen the financial burden for the underinsured:
- Good Days is a chronic illness charity dedicated to helping those in poverty access medical treatment for their illness. Their financial assistance covers medical expenses where insurance falls short.
- By working directly with pharmaceutical companies, RxHope helps low-income patients access necessary low-cost medications. A physician is required to complete an application on a patient’s behalf.
- NeedyMeds provides an up to 80% discount card for prescription drugs without income, insurance, age, or residency requirements.
Government grants and programs for chronic illness assistance
Some government resources do exist to help those living with a chronic illness, though eligibility requirements are typically strict. Below is a list of resources and programs that may be able to help you:
- Run by the National Council on Aging, BenefitsCheckUp quickly connects older adults with medical assistance programs in their area, including Medicare.
- The Administration for Community Living supports chronic disease self-management programs nationwide, through their yearly grants.
- Many states and the U.S. Virgin Islands have State Pharmaceutical Assistance Programs to help pay for prescription costs, drug plan premiums, and other drug expenses.
- If you lose your job for any reason, you can still keep your health insurance with benefits under COBRA. This act gives employees the option to continue their employer’s health insurance plan for 18 to 36 months, though premiums must be paid entirely out-of-pocket.
- You may also qualify for Social Security disability benefits if your chronic disease has prevented you from working for at least the past year.
Find chronic illness support groups
You don’t have to do this alone. There are many support groups that exist to help those living with a chronic illness. Participating in a support group can connect you with a community of people empathetic to your illness and help you find the local resources you need to manage your disease, like doctors or caregivers. Check out a few support group options below:
- The Center for Chronic Illness offers in-person support groups for those living in the Seattle area, as well as online groups for people around the world.
- Psychology Today manages a chronic illness support group database that helps connect you with a support group no matter where you live.
- Find a local community through Meetup, which hosts nearly 350 chronic illness support groups around the world.
5 tips on how to find the best support group for you
Finding a suitable chronic illness support group is crucial for those seeking empathy, understanding, and shared experiences. Here are some tips to help you locate one:
- Consult with your health care providers or therapists for information on local or online support groups specializing in your condition or offering general support for chronic illnesses.
- Find support groups for chronic illnesses on platforms like Facebook and Reddit by searching for relevant keywords and joining groups where individuals provide mutual support.
- Ask for recommendations from patient communities of individuals facing similar health challenges for personal referrals.
- Ensure the support group has active and attentive moderators for a safe and respectful environment.
- Evaluate group dynamics by observing discussions in different groups to find the right fit for your needs, including a supportive atmosphere.
How crowdfunding can help
Crowdfunding is a great option for those who need support right away and can act as your own chronic illness relief fund. With online fundraising, there are no waiting periods to receive your funds—you can access donations immediately to use toward your medical needs. Use these medical fundraising tips to make sure your fundraiser is a success:
- Tell your story through your fundraiser. Only share details you’re comfortable with, and make a connection with your donors by sharing how their donation will make an impact.
- Consider ways of fundraising without social media, such as reaching out to donors in person.
- Host a fundraising event as another way to connect personally with donors as well as your local community.
- Send thank-you messages to your donors, along with an update. A simple message can go a long way in expressing gratitude, and donors will be happy to know how their funds have helped.
- To ask for additional donations aside from social media, plan events to help raise more money like yard sales, a car wash, or a bake sale with your community to create a sense of urgency.
