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It's Time to Put Patients Over Profit

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Every day, across the nation, individuals are faced with the harsh reality of being unable to receive medications, tests, and treatments prescribed by their health care providers. For some, it’s a matter of waiting weeks for approval, during which their condition worsens. For others, it is a flat-out denial, leaving them scrambling to find alternative solutions or facing the prospect of going without necessary medical care altogether.

In the intricate web of the United States health care system, prior authorization is a formidable barrier between patients and access to necessary medical care. Originally designed to control costs and prevent unnecessary treatments, this health insurance practice has spiraled out of control, resulting in egregious patient outcomes. The cumbersome prior authorization process has morphed into a bureaucratic nightmare, stifling patient care and burdening health care providers. As the flaws in this system become increasingly apparent, the call for reform grows louder, demanding a shift toward a more patient-centric and efficient model.

The Problem With Prior Authorization

Insurance companies now have more power over your health care than your doctor. The current structure undermines the doctor-patient relationship and erodes trust in the health care system as a whole. Doctors are required to justify to insurance companies why they believe patients need care, having to demonstrate the necessity of prescribed treatments. Prior authorization shackles our health care system, chaining physicians to paperwork and appeals while their patients suffer. All of this suffocates the very essence of compassionate care.

When insurance companies deny coverage for legitimate care prescribed by health care providers, they are not just making financial decisions — they are effectively usurping the role of licensed medical professionals and jeopardizing patient health. Insurance companies are walking a fine line where they practice medicine without a license.

Health insurance companies assign a dollar value to human beings, and if you cost them money, your care will be denied. Behind every denied prior authorization request is a person whose health and well-being hang in the balance. Delayed or denied access to medical care leads to deteriorating health, decreased quality of life, and, tragically, even premature death. Now more than ever, patients are forced to navigate a health care system more concerned with profit than the human lives it affects.

The human toll of prior authorization issues cannot be overstated.

Imagine the anguish of a patient facing a recurrence of a relentless cancer, only to be denied a crucial scan to assess its spread. Put yourself in the shoes of parents fighting to get an insulin pump for their child with type 1 diabetes, only to be told they must first try a more cumbersome and less effective option. Consider the frustration of a hospice and palliative care physician battling to secure pain medication for a terminal patient cruelly denied comfort measures at the end of their life. Think about the anguish of a person with a severely debilitating disease unable to afford the out-of-pocket costs of a pricey monthly medication that brought remission. Despite appeals, they are denied coverage, leading to unnecessary suffering.

I belong to the latter category, and these scenarios aren’t hypothetical; they represent the harsh realities countless Americans face daily. These are just a few individuals I spoke to after my story about prior authorization hell went viral nationwide.

For six months, I received intravenous immunoglobulin (IVIG) treatments that put me into remission, and suddenly my insurer stopped paying. Despite being fully disabled after enduring five brain surgeries, three spinal surgeries, having a rare autoimmune disease and multiple sclerosis, my medical history was not enough to secure the continued treatment I needed. Instead, I was confronted by a process that was nothing short of Kafkaesque — endless calls, mountains of paperwork, and conflicting information obstructed my access to vital care prescribed by my health care provider. Ultimately my denial letter would reveal the decision was based on profit — in their eyes my IVIG was not the “most efficient and economical service.”

Since my insurer ceased covering IVIG, my remission has ended, and recent MRI results indicate a troubling escalation of MS-related lesions and neurological deterioration. This progression poses severe risks to my health and well-being, making IVIG therapy crucial to halting further advancement and alleviating associated symptoms. With standard therapies unsuitable due to my severe autoimmune hypersensitivity (I’ve even experienced Stevens-Johnson syndrome), IVIG remains the sole option to manage my condition.

I have become an accidental advocate and one of the faces of prior authorization reform in our country. I never envisioned myself having to delve into every aspect of navigating the health care system to fight for my treatments. My frustration with the unethical practices of my insurer, Blue Cross Blue Shield Illinois/Health Care Service Corporation, ignited a passion within me to expose the tactics insurance companies employ to burden patients with overwhelming medical bills. These companies make billions in profit by denying care, and my life and well-being represent lost profit.
Now, I’ve embraced the opportunity to shine a light on unjust denials, educate others, and empower fellow patients. Along the way, I’ve been invited to engage in meaningful discussions with health care leaders, changemakers, and stakeholders regarding initiatives to enhance health care quality and health policy. I am using my battle to continue to fight for change, not just for myself but for countless others facing similar injustices.

The Need for Reform

In the tumultuous landscape of American politics, where divisions often seem insurmountable, prior authorization reform is a pressing issue that transcends party lines. This is not a partisan issue — it’s a matter of basic human dignity and compassion. Regardless of political affiliation, we can all agree that no one should be denied access to the health care they desperately need, and no person should have to choose between their health and financial stability. It is time to overhaul the prior authorization process, streamline approvals, increase transparency, and hold insurance companies accountable for decisions that impact people’s lives. It is time to put patients over profit.

While we are witnessing some reform from the federal government, there is still a lot more work that must be done. The Centers for Medicare and Medicaid Services (CMS) implemented new regulations to expedite prior authorization decisions, aiming to minimize patient care delays. Effective in 2026, these changes mandate that payers respond to expedited or urgent requests within 72 hours and standard requests within seven calendar days — not business days. Notably, enforcement of these policies, particularly concerning Medicare Advantage payers, may involve sanctions and monetary penalties from CMS, ensuring accountability and effective implementation of the rule.

Although the CMS prior authorization reform is a notable advancement, its reach is restricted to only a segment of Americans, leaving 150 million people in employer-sponsored coverage untouched by the adjustments. Extensive work remains to tackle the pervasive problem of denials throughout the U.S. health care system. As of 2024, at least 57 bills have been presented in 22 states to reform prior authorization practices. Without federal intervention to establish consistent standards for all prior authorizations nationwide, regulations will continue to vary from state to state.

Be Your Best Advocate

Most Americans have no idea how to fight their insurance company, which is precisely how they want it. When faced with denial, you have three choices: drain your savings to cover expensive medications, forgo essential medical treatment, or stand up and appeal.

Being a good advocate for your health care is about asserting your rights, voice, and agency in your health decisions. Knowledge is your greatest ally in navigating the complex health care landscape.

Decision-makers in these companies shield themselves and employ questionable tactics, purposely complicating the process in the hope that patients will accept rejection. In today’s health care landscape, being a passive patient isn’t enough; you must grasp the intricacies of insurance company policies that govern your care. Understanding your policy is crucial, yet equally vital is comprehending the tactics insurance companies use to deny care, such as peer-to-peer reviews and step edits.

In peer-to-peer reviews, the process lacks both peer involvement and genuine review. Insurance companies hire doctors, often lacking relevant qualifications, to assess cases with strict instructions to deny care. Many of these reviewers have histories of malpractice actions or cannot practice medicine independently for various reasons. Consequently, unqualified doctors are entrusted with making life-altering decisions; for instance, pediatricians are making decisions for cancer patients, and individuals like myself have an obstetrician/gynecologist, far removed from neurology, making decisions regarding complex neurological diseases.

Step edits refer to a cost-saving strategy used by insurance companies where patients must first try and fail with lower-cost treatments before they are approved for more expensive options. Let’s say a patient has been prescribed a brand-name anticoagulant medication like Eliquis by their doctor. However, their insurance plan requires step edits, so they must first try and fail a generic anticoagulant medicine, such as warfarin, before the insurance approves coverage for Eliquis. Step edits boil down to another numbers-and-profit game for insurance companies. Some critics argue that insurance companies receive financial incentives or kickbacks from pharmaceutical companies for promoting certain medications over others, regardless of their efficacy or suitability for patients’ needs.

If you have any form of health insurance, these issues impact you. You are at the mercy of your insurance company, no matter what your doctor believes is medically necessary. Failure to address this growing problem will only exacerbate the inequities within our health care system and further jeopardize the health outcomes of millions of individuals. The steps we take today, whether advocating for reform, understanding the complexities of insurance policies, or standing firm in appeals and holding companies accountable, pave the way for a future where health care serves the needs of all.

What You Can Do

Educate Yourself: Knowledge is power. Learn about your medical condition, treatment options, and insurance coverage. Understand your policy’s terms, exclusions, and appeals process. Here are some tips to help you fight for the care you need:

Communicate Effectively: Develop strong communication skills to articulate your needs, concerns, and questions to health care providers and insurance representatives. Be assertive yet respectful in advocating for what you need.

Build a Support Network: Surround yourself with a team of trusted individuals, including family, friends, and health care professionals, who can provide guidance, support, and advocacy assistance.

Document Everything: Keep meticulous records of doctor’s visits, medical bills, insurance correspondence, and treatment plans. Documentation is key when disputing insurance denials or seeking alternative coverage options.

Know Your Rights: Familiarize yourself with your rights as a patient, including your right to appeal insurance denials, access medical records, and seek a second opinion.

Persist and Persevere: Advocacy is often a marathon, not a sprint. Pursue the care and coverage you deserve, even in the face of obstacles and setbacks.

Stay Informed: Stay updated on changes in health care laws, regulations, and policies that may impact your coverage or rights as a patient.

Originally published: April 9, 2024
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