Living with a chronic illness can be painful, frustrating, and exhausting. On top of managing our disease(s), most of us are tasked with an endless list of doctor’s appointments, pricey medical bills, and the responsibility of coordinating care. Managing the financial and administrative burden of chronic disease can be overwhelming (to say the least).

I’ve picked up a series of tips, tricks, and resources over the years that I am eager to share with fellow patients to help empower them with tools that might make their journey just a little bit easier.

General suggestions & resources for patients

Make extra copies: After you receive your copy of medical records, or other paperwork etc., make sure you make at least one extra photocopy. You never know when you’re going to need it, or accidentally lose your other one. Sometimes losing important medical records can lead to additional fees.

Request a pharmacy calendar year printout: At the end of each calendar year, contact your pharmacy and request a full printout of prescriptions filled over the course of the year. This printout shows the cost to patient, as well as insurance coverage. Note that you will need to provide a start date and end date for itemization.

Request a provider calendar year printout: At end of calendar year, you can contact each provider you visited and request a full printout of office visits. Note that you will need to provide a start date and end date for itemization.

Bring a friend: Bring a trustworthy friend, family member, or peer to your doctor appointments when possible. This person can take notes to compare to yours during your visit. It’s possible they will make note of something you missed. It’s also a great support system to remind you that you’re not alone.

Get a caseworker: Talk with your insurance company to see if there is a caseworker you can communicate with directly to support your needs. Note that some employers offer this through their human resources department.

Find a patient advocate: Ask your hospital, specialist, or non-profit organization for your chronic illness if they have a patient advocate who might be able to support you through the process. Note that this could incur additional costs that aren’t covered by private insurance.

Your rights as a patient

female doctor

Second opinions: You’re entitled to a second opinion even within the same office practice as where you received the first opinion. No questions that are asked from your starting physician should be tolerated (ex: why are you not seeing me anymore? Why are you questioning my treatment?). It’s your body, take an active role. Take control. See a provider you trust in their entirety

Personal medical records: You’re entitled to one copy of your office visit notes, tests, procedures, and lab results. This is not retroactive (more than 6 months), but use it in the current and future. It is a federal law to allow patients to have access to their notations. This could be in the form of an e-chart, CD/DVD copy, print out...whichever is easiest to the provider supplying the information.

Additional copies beyond the first are subject to feels. You can view medical record fees for each state here.

Explanation of charges: Always ask for explanation of a billing statement, as well as the provider(s) listed on the statement.

State rights: It is important to know your right as a patient as it relates to your employer. Under the Family and Medical Leave Act, eligible employees of covered employers are entitled to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.”

Tips for navigating healthcare payment

Financial payment plan with hospitals: You can set up a financial assistance plan through a hospital by way of their renewable application every 3-6 months. This is available on many hospital websites, by visiting their billing department in person, or by calling their billing department.

Payments to providers: Discuss and set a financial payment plan with each doctor’s office. If you can not pay the full cost upfront, work with your provider to set up a billing plan to pay a minimum each week or month.

Patient assistance programs: Many pharmaceutical companies offer patient assistance programs (PAP). Ask your doctor, nurse,medical assistant (MA), or pharmaceutical representative for details. Pharma companies will also list details on the medication’s website.

Financial options for treatment: Be upfront with your doctor about your financial status as sometimes they can offer alternative options or make recommendations around other resources you can utilize.

Clinical trials: If insurance has denied treatment coverage or you can not afford to pay for your treatment, talk to your doctor about potential clinical trials for your disease. Clinical trials often offer quality care and treatments at no cost to the patient.

Financial resources for patients

Patient counting money

Federally Funded Health Centers: These health centers deliver affordable, accessible, quality, and cost-effective primary health care to patients regardless of their ability to pay. To find one near you, go to the search page and type in your zip code.

NeedyMeds: NeedyMeds has a database of nearly 16,000 clinics that offer medical services and are free or low-cost with a sliding scale based on income and/or offer some type of financial assistance. You can search for one near you here.

Patient Advocate Foundation: This organization provides financial resources to help patients access healthcare, and can be reached at (855) 824-7941 or by visiting the financial aid section of their website here.