Chapter Five: When You Need Care Now

What Do I Do if I Am Not Receiving Adequate Care?

We’ve already explained that there is a certain level of care from the medical industry to which all patients are entitled, and that there are resources in the form of government regulatory bodies that will step in if that standard is violated. But dealing with the government can take a while, and medical mistakes can often be a matter of life or death. In this section, we discuss additional resources available when a patient is not receiving adequate care.

Independent “patient advocates” or “health care advocates,” which are often private companies, untethered from medical-industry influence, exist to provide assistance to, and advocacy for, patients. Unlike lawsuits and regulatory group complaints, patient advocates can act immediately.

According to AdvoConnection, “Advocates work outside of existing reimbursement-based healthcare systems in order to bring you the best care you can get, focused on your wants and needs, without the for-profit influence or rationing that takes place from inside of the medical system.” Health care advocates may provide such services as accompanying patients to medical appointments, staying with hospital patients at their bedsides, helping patients learn more about their medical condition and treatment options, helping patients make difficult medical decisions, reviewing prescriptions to make sure there are no conflicts, teaching pain management techniques, helping patients navigate the insurance “maze,” helping patients dispute coverage denials, managing or reducing bills, helping develop end-of-life plans, filling out paperwork like living wills, DNRs, and other advance directives, tracking paperwork and records, and much more.

AdvoConnection, as well as the National Association of Health Advocacy Consultants, are two of many organizations which serve as clearinghouses for locating a health advocate near you. Verywell Health, an award-winning online resource for health information, suggests treating the selection process like any other job interview, with targeted questions for the candidate such as: whether he or she has ever worked with a patient with an ailment similar to yours before, what their credentials are, do they have a certification from the Patient Advocate Certification Board, what is their charge for services, do they have references, and where are they located.

A national advocacy group, Patients Rising, provides support and education to people suffering from chronic and life-threatening illnesses, and advocates for what patients need, including access to treatments, innovations, and care. Of the resources the organization offers, one is “Voices of Value,” a multi-media hub created by patients, for patients. The goal of Voices of Value is to share information and insights into dealing with chronic or life-threatening illnesses. Another resource is “Patients Rising University,” an online system that connects patients with experts from various fields. This way, experts can directly share information on topics, including healthcare organization, financial planning for a chronic illness, and clinical trials.

Understanding Health Insurance

Your insurance company is another resource available to you, in terms of both the quality of care and the cost of care. You may have insurance through your job, or through Medicaid or Medicare, or through a private policy purchased through the healthcare “marketplace.” Since the Affordable Care Act (“ACA”), open enrollment for a marketplace program is limited to the window of November to mid-December of each year. If you missed this opportunity, you may still be able to change insurance providers through a "special enrollment period” triggered by specific events, provided you act within 60 days of the specific event occurring. Triggering events include getting married, having a baby or adopting a child, getting divorced or legally separated, the death of a policyholder, if you moved, or if anyone in the household lost coverage within the past 60 days or anticipates losing coverage within the next 60 days.

Health insurance companies offer two major types of plans – Health Maintenance Organizations and Preferred Provider Organizations, also known as “HMOs” and “PPOs.” Both HMOs and PPOs attempt to optimize health care services in terms of benefits and costs by facilitating them through a single network. But they each come with pros and cons.

HMOs usually require you to choose a primary care physician or “PCP” who then becomes the point person through which you gain access to medical care. Importantly, the PCP you select must be affiliated with the HMOs’ network and the insurance company will not cover any out-of-network services. In contrast, PPOs do not require you to select a gatekeeper PCP and will allow you to see doctors outside of the PPOs’ network.

Another way HMOs and PPOs differentiate from one another is that, with an HMO, you cannot make an appointment with just any specialist. Rather, your PCP must refer you to a specialist who falls within the HMOs’ network. But with a PPO, you can freely schedule an appointment with a specialist of your choosing.

Finally, what many consider to be the most important difference between HMOs and PPOs is their respective cost breakdowns. Because HMOs restrict you to only in-network providers, they have lower monthly premiums. PPOs, on the other hand, give you access to out-of-network providers, but usually have you “pay a higher percentage of the costs for those services.” Furthermore, in those cases where you go to an out-of-network provider, a separate deductible may apply.

When selecting an HMO versus a PPO, consider your past medical needs and try to forecast your future ones, think about the availability of providers close to where you live, and consider your income.

If your employer does not provide you with health coverage, you missed open enrollment for purchasing a healthcare plan from the marketplace, and you do not qualify for special enrollment, you still have options in most states. You may be able to purchase a “short term" healthcare plan, also known as “gap” coverage, which is designed for people “who experience a temporary gap in health coverage.”

Although short term healthcare plans usually cost less than other major health plans, they are more limited. For example, short term healthcare plans, among other things, are not renewable, are often medically underwritten, exclude coverage for pre-existing conditions, and are not required to cover essential health benefits (e.g. maternity care, prescription drugs, mental health care, etc).

Finding the rules and costs of healthcare coverage to be overwhelming, still others turn to Membership Organizations, or groups dedicated to providing resources and benefits to members who may be defined as sharing commons interests, trades or professions, for their healthcare. Examples of groups which may be able to help you find healthcare are unions, alumni associations, or professional associations, such as your local chamber of commerce.

Additionally, there is a unique group of alternative plans which many find valuable called “Health Sharing Plans” or “Medical Cost Sharing Ministries.” These plans are not traditional health insurance. Instead, they are associations comprised of individuals of similar mindsets who agree to help pay each other’s medical expenses. These plans succeed because of their design as faith-based programs, where members of the same faith commit to helping each other face life’s unforeseen tragedies. Health Sharing Plans don’t have a network, and members may visit any provider of their choice and use their membership card like a regular insurance card. Many require bills to be paid upfront, then submitted for reimbursement. They generally ask that all members pay a fee, which forms the pool of money for the members to draw from, and they ask that all members profess the same values. Several major examples of Health Sharing Plans are Christian Health Care Ministries, Samaritan Ministries, Medi-Share, and Liberty Health Share.

No matter what health insurance avenue you choose, it is always a good idea to know exactly what is covered and what is not. You might have a lot more freedom with your coverage than you think.

Services: How an Independent Patient or Health Advocate Can Help You, The AdvoConnection Directory, Advocacy and Care Management Services (last visited Sept. 18, 2019).

Guidance Through the Deep Waters of Today’s Healthcare, National Association of Healthcare Advocates (Last visited Sept. 18, 2019).

Trisha Torrey, How to Find, Interview, and Choose a Patient Advocate(Sept. 16, 2019), Verywell Health.

About, Patients Rising, (last visited Sept. 18, 2019).

Dates and Deadlines for 2020 Health Insurance,, (last visited Sept. 18, 2019).

Enroll in or Change 2019 Plans – Only with a Special Enrollment Period,, (last visited Sept. 18, 2019).

HMO vs. PPO Health Insurance, FindLaw, (last visited Sept. 18, 2019).

HMO vs. PPO Health Insurance, FindLaw, (last visited Sept. 18, 2019).

Karen Pollitz et al, Understanding Short-Term Limited Duration Health Insurance, Henry J. Kaiser Family Foundation (Apr. 23, 2018).

What is the Health Share Membership, Blake Insurance Group, (last visited Sept. 18, 2019).

See Lauren Greutman, Health Sharing Programs: The Complete Guide to Medical Cost Sharing, Lauren Greutman (Dec. 14, 2018),

Christian Health Plans , (Last visited Sept. 18, 2019).

Samaritan Ministries, (last visited Sept. 18, 2019).

Medi-Share , (last visited Sept. 18, 2019).

Liberty HealthShare, (last visited Sept. 18, 2019).

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