When it comes to the challenges of working within the health care system, our family has gotten plenty of experience as we’ve dealt with my wife’s chronic pain: step therapy, delays in the authorization process, medications being moved to the “specialty tier” level—even being considered a drug seeker.

Becoming an advocate includes having knowledge of the systemic changes our pain community needs, helping foster education for providers, patients and caregiver alike, recognizing the racial and ethnic disparities that exist in care, and understanding how/why standards of care are in place and overseen by the FDA. Navigating access to care requires people in pain, caregivers, providers, insurance companies, pharmacists, durable medical equipment companies, pharmaceutical companies and legislators to solve problems in open communication partnerships.

That’s a tall order. So what can you do in the meantime to get proper and timely care for your loved one?

KEEP MEDICAL RECORDS ORGANIZED.

Remember to request medical records immediately following each appointment. The Power ofPain (POP) Foundation has a form available online for your convenience—www.powerofpain.org/media/records_request_letter_to_docs.pdf—that can be customized to assist you with this process. Have it filled out and ready so you can drop off there request when you check out from the appointment. Request that you be sent office visit notes or hospital notes as soon as they are available. There may be a cost associated with this, but many states have a law that prohibits the provider from charging if you are using the records for future medical care. These days, many practices use patient portals where you can access and print these records for free.

ALWAYS APPEAL DENIALS FROM INSURANCE COMPANIES.

Far too often claims are denied right from the start. Insurers may think patients don’t have the energy or awareness to appeal denied claims. Having copies of your medical records makes it easier to complete this process without taking much time from your provider. Complete as much of the appeal as you can for the patient and then pass it on to the provider to finish and submit.

ALWAYS CHECK YOUR MEDICAL BILLS.

The Joint Commission on Accreditation of Healthcare Organizations says that eight out of ten hospital bills contain errors. Check billing codes, and make sure that insurance has been processed properly and that the patient’s name and date of birth are correct. Any mistake in any of these areas can be quite costly to the bottom line. Inability to pay medical bills is the leading cause of bankruptcy.

CHECK OUT TRANSPORTATION OPTIONS.

Many patients miss appointments due to lack of transportation. For those caregivers who work, it can be draining to take off multiple times a month to take your loved one to the doctor. There are transportation companies in every state now, many covered by insurance companies and workers’ comp. Contact your provider to learn more.

PROVIDE OPTIONS & IDEAS TO THE PATIENT, BUT DON’T MAKE THEIR DECISIONS FOR THEM.

We will discuss this topic in depth in Part Two of this series.

SPEAK UP & BE A POSITIVE, SUPPORTIVE VOICE FOR YOUR LOVED ONE.

Attend doctor visits and help your loved one remember or describe what they are dealing with on a daily basis. I know that on a bad pain/flare day, my wife may have trouble focusing or concentrating. When I attend her appointments with her we act as a team, resulting in more objective reports because I can note what I saw as a caregiver. Stay on top of scheduling follow-ups, tests and procedures your provider says have been ordered for the patient.

FILE FOR GRANTS & FINANCIAL ASSISTANCE FROM PHARMA COMPANIES & FOUNDATIONS TO COVER SPECIALTY-TIER MEDICATIONS.

Many companies offer discounts or free medication for specialty prescriptions. It helps to visit the same providers and create a care team that specializes in your condition. This team approach makes it easier to obtain prescriptions, procedures and necessary care. It also makes it easier to file for grants and financial assistance when it comes to gathering records and getting your providers to write letters to support your case. New complications can be addressed more quickly and will end up costing less in the long run.

COMMUNITY FUNDRAISERS, FOUNDATION GRANTS FOR SPECIFIC DISEASES OR SOCIAL MEDIA CAN HELP OFFSET EXPENSES.

Caregivers may help coordinate fundraising efforts. Explore options and talk to other caregivers about ways to organize effectively. Some great places to start are: www.gofundme.com, www.caringbridge.org,  www.fundrazr.com, www.indiegogo.com and www.copays.org.

LIMITED OR NO INSURANCE COVERAGE? TALK TO PROVIDERS ABOUT CASH DISCOUNTS & OTHER MEANS OF COVERING THE TREATMENT GOALS.

Insurance plans may limit available services, but if you appeal and show medical necessity, getting some or all of the expenses covered (even if they are typically denied) will open your access. Don’t be afraid to seek help. Asking and hearing “no” is better than not asking.

Access to care shouldn’t depend on where you live or who you are, but sometimes it does. Chronic pain affects over 100 millions Americans. Understanding the health care system and how to navigate its red tape can bridge the gap to help your loved one access the care he or she deserves. For more information, visit www.powerofpain.org/patient-awareness. {PP}