Rare Disorder or Misdiagnosed?How a Private Patient Advocate Can Help

Perhaps you are given a diagnosis that just doesn’t seem right for you. Perhaps your symptoms don’t add up to what your healthcare provider told you. Or…perhaps you were diagnosed with a rare disease and not offered much treatment or management plan.  If this sounds like you or someone you know, then continue reading…

Sadly, this happens all too often.  Why? Well, there are many reasons that can be guilty of the cause. For one, science is an art, and doctors and other healthcare providers use examination and tests to lead to a diagnosis that best fits the puzzle. Sometimes the answer is not exactly black and white. Every human is unique and many times so are their symptoms. “Textbook presentation” is not always the case. 

Secondly, the demands of today’s fast-paced healthcare system leave little time for healthcare providers to spend hours investigating each patient’s unique case to figure out the best outcome.  Unfortunately, office visits are often crunched into 15 minutes or fewer timeframes, patients are squeezed in last-minute, perhaps double-booked, and then to top it off, the COVID-19 global pandemic occurs. Even when healthcare providers want to dedicate the extra time to dig deep into your specific case, the healthcare system logistics makes it nearly impossible.  While some hospitals do have scheduled meetings where challenging cases are discussed among specialists, this does not happen in all hospitals, and especially rare in primary care offices. While patients may be referred when necessary to the appropriate specialists in the area of need, this does not always happen.

The complexity of medicine is another reason that misdiagnosis occurs or rare disorders go inadequately managed. There are constant ongoing advances in technology and research and new diagnosis being discovered.  It is impossible for every healthcare provider to keep up with each and every advancement.

How it affects you, the patient

Despite the many reasons why people get misdiagnosed or undermanaged, the end results are essentially the same.  The patient is often left with feelings of defeat, exasperation, exhaustion, abandonment, anhedonia, and depression.  Any one of these alone is a horrible feeling.

So what do you do?? This is where a private patient advocate can help.

What is a Private Patient Advocate?

A private patient advocate is an experienced healthcare professional that provides unbiased assistance to help navigate your path to better health and achieve your personal goals. A private patient advocate does not work for an insurance company or hospital; therefore their first priority is you.    

How can a Private Patient Advocate help in a situation of misdiagnosis or rare diagnosis?

A private patient advocate can help in several ways.  To highlight just a few:

Finding the right care

At Pathway Patient Advocates you have access to not 1 but 2 patient advocates; therefore your advocates are experienced not only in the medical aspect of healthcare but also the administrative side including insurance and billing.  The experienced patient advocates can help you locate providers and resources that can help address your specific situation best as well in the most cost-efficient way for you.


It is important to find a private patient advocate that has experience in advocating for patients who have been misdiagnosed or have a rare disorder.  Advocates with this experience, may have already had clients similar to you and have increased knowledge of the situation.  

Saving time and money

With an atypical diagnosis, time is of the essence. Often the sooner you can find a proper diagnosis and good management plan, the better chance you will have in managing symptoms, treatment, and quality of life.  A private patient advocate can efficiently help you find the resources that you need, as they have the process and tools required to do so. This, in the end, will save you both money and more importantly time. 

Personal Support

With a private patient advocate, you are not going through this challenge alone.  A private patient advocate is here for you to walk side-by-side and assist you through your path. Even if you are fortunate enough to have family or friends by your side, it is comforting to know that you have your very own private patient advocate with you looking out for your best interest.

Call Pathway Patient Advocates today, you won’t be disappointed. We are here for you: (248) 247-8552

PA, NP, MD, DO, Resident, Fellow…how are these titles different?

Years ago a person wearing a white coat in a hospital or medical office was a doctor…plain and simple.  Well…this is no longer the case.  As if the healthcare system isn’t confusing enough, providers with various acronyms all wear white coats. So how do you know who is who, and what exactly do they all do?  

Lets first start with the commonly known title: doctor:

A doctor, also known as a physician, is a person that holds a medical degree after completing medical school. After medical school, most doctors also complete various amount of years of residency, where they continue to train under a seasoned doctor. The number of years of residency varies based on the specialty that they choose. In addition, they may also complete a fellowship.

MD versus DO

In many ways, MD and DO are the same. 

The MD title is given to a doctor who has completed allopathic medical school.  DO is given to a doctor who has completed an osteopathic medical school.  The main difference in the training is while MD focuses on treating specific conditions with medications;  DO training focus on whole-body healing.  In practice, these doctors work together in the same facilities, and both hold the qualifications for practicing medicine.

Resident Physician

A resident is an aspiring doctor (MD or DO) that has completed medical school and currently practicing under supervised training to gain experience in the field. The residency program varies based on the specialty. 


You may have heard a medical professional being referred to as an intern.  An intern is typically a first-year resident. An intern has successfully completed medical school and now practicing under the supervision of a physician. After the internship, the provider enters residency.


A fellowship training program is required for a physician to practice as a specialist. For example, surgical oncology. During fellowship, the “Fellow Physician” closely trains under the specialty physician.  The length of fellowship varies based on specialty. 

Physician Assistant (PA)

A Physician Assistant, sometimes also called a Physician Extender or Advanced Practice Provider. A Physician Assistant is a medical professional who has successfully graduated from a Physician Assistant Studies Program and completed board certification.  Physician Assistants hold at a minimum a masters of science degree and some also have a Doctorate or Ph.D. degree. A Physician Assistant can diagnose illnesses, develop and manage treatment plans, and prescribe medications.  They can also perform procedures and work in specialty practice areas such as surgery, emergency medicine, pediatrics, critical care medicine, and psychiatry. Physician Assistants can be a person’s primary healthcare provider.

Nurse Practitioner (NP)

A Nurse Practitioner, also known as an Advanced Practice Nurses, or APN.  A nurse practitioner is a registered nurse who has gained additional training in a specialty area.  Nurse Practitioners hold a master’s degree in nursing and board certification in their specific specialty.  Nurse practitioners can diagnose, treat, and prescribe medications.  They can be a person’s primary healthcare provider. Nurse practitioners can also hold a Doctorate of Nursing degrees. 

A Common Mission

Whether you see a healthcare provider whose badge reads MD, DO, PA, NP, fellow, intern, or resident…they all share one common goal.  The goal of these professions is to provide patients with the best possible care and quality of life.  

Childhood Cancer

September is Childhood Cancer Awareness Month.  Being a parent can be a wonderful experience yet exhausting and challenging.  If your child becomes ill with cancer, the challenge becomes overwhelming.  Things can change overnight, and as a parent or caregiver of that child, you may often feel lost and defeated.  While you want to focus all your attention to this unexpected news, life around you still continues. Other children and family members still need to be cared for, bills still come and you still need to eat, sleep, and care for yourself so that you can best care for others.   

Stressful and Overwhelming Situation

It’s a stressful situation that is both physically and emotionally exhausting.  As a parent, you want what’s best for your child, especially during a situation like this.  This is where a private patient advocate can help.

How can a Private Patient Advocate help with Childhood Cancer?

At Pathway Patient Advocates, we are Private Patient Advocates; therefore we are not affiliated with any physician, hospital, or insurance company.  We provide unbiased assistance in navigating the health care system.  A patient advocate can help you find the best care and resources for your child, in addition to saving you hours of time; which you can instead spend those hours with your child and loved ones.  A patient advocate can help clarify things that don’t seem to make sense, as well as help review medical records and obtain necessary appointments in a timely fashion.  A patient advocate will keep your records organized and help coordinate your child’s care to prevent medical errors. 

With multiple medical appointments, insurance and billing often becomes chaotic and takes hours of telephone calls discussing coverage approval and unexpected medical charges.  With a Patient Advocate, you can eliminate that time, and have the Patient Advocate take care of it in an organized and timely manner.

A Patient Advocate can provide you with additional resources to help you and your child have the best possible care, quality of life, and experience during this difficult time.

When is it best to hire a Patient Advocate?

Now is the time!  Whether your child was just diagnosed, diagnosed years ago, or has an uncertain diagnosis, we can help.  We also stay with you for as long as you need us. We are someone that is here when you are frustrated and feel like you have no one else to call.  We are always here to listen and to help.

Reach out to us to learn more.  We would love to talk to you and tell you how we can help.  It’s not only our job, it’s our passion.

(248) 247-8552


Is it Okay to Change Oncologists?

The short answer;  ABSOLUTELY!

A cancer diagnosis hits patients and loved ones like a brick. Most often you are unfamiliar with the ins and outs of the diagnosis, especially initially.  Cancer management is time-sensitive and you may feel rushed to make life-altering decisions while trying to cope with the emotional aspects and everything else.  You likely at some point have felt a degree of depression, anxiety, and a feeling of uncertainty. Hopefully, you or your loved one have started-off the path of managing the diagnosis with an oncologist and team that you feel comfortable with and have the utmost trust for. 

However, sometimes further into the process, things change and patients and loved ones often feel “stuck.” Just like in any relationship, people’s demeanor, personality, and trust level can change. As a patient, you should feel comfortable getting a second opinion at ANY point of your care. I have seen several patients not seek a second opinion, because they felt inadequately competent in the field and didn’t want to “overstep”.  Remember this is YOUR life.   You should always feel welcome to ask questions and feel comfortable with the plan and care that you receive. Each person has a different experience.  You may have received a great referral from a friend about an oncologist, but your experience was very different. And that is ok!

In my opinion, a good oncologist (or any healthcare provider), should encourage, or at the very least be okay with a patient getting a second opinion. Of course, medicine is a business, but the first priority should ALWAYS  be the quality of life, health, and success of the patient; not an oncologist’s reputation or monetary gain.  

I once had a very reputable oncologist tell a client and myself that he “ is only willing to be the captain of the ship and nothing else”.  This was in regard to requesting if he would be willing to assist in managing care locally, for my client who was currently part of an out-of-state clinical trail.  Definitely NOT the answer my client was looking for.

As a patient, it is very important that you feel confident in your choice of oncologist.  And if that changes, a second opinion is almost always an available option. You may have a second opinion that is exactly the same as your current treatment. In that case, it may help confirm that your current management plan is appropriate for you.  Or it may be the same treatment, but you feel more comfortable asking questions to a new provider, etc.

Don’t be afraid to obtain that second opinion.  Pathway Patient Advocates is here to help you navigate through it all.  Contact us (248) 247-8552.

Do you have a Medical Bill?

Has your insurance company ever denied any of your claims? Have you received bills stating you’re responsible for the full cost of services rendered? Have you ever been told after receiving care, imaging, or lab work that it is not covered because the services were not necessary?

Most of us have encountered rejected medical claims. Many times, we may not know why or how a claim was rejected, but we pay anyway because we got a bill. The good news is, you do not always have to pay! After finding out why your claim was rejected, you always have a chance to appeal the rejection in hopes that the insurance company overturns their decision. This may result in them paying the claim so that you are not stuck with the bill!

Pathway Patient Advocates assists with medical bill appeals

Insurance companies only know what information they receive from the billing provider. For instance, let’s say you were having chest pain and went into an urgent care center. The urgent care does a workup including a physical exam, labs, chest x-ray, and an EKG. They end up diagnosing you with the common cold. The urgent care submits a claim to your insurance company reflecting which tests were done and what the final diagnosis was. Weeks later, you receive notice from your insurance company that you are responsible for the EKG because it was not medically necessary. Of course, this was necessary due to the chest pain you were experiencing. But to the insurance, why would you need an EKG completed is you just had a common cold? You may simply file an appeal to have the insurance company reverse the denial and pay for the services in full.  

Sounds simple, right? Sometimes it is, while others are a little more difficult. Every insurance company has a different appeal process, and it is important to understand what each company requires. Many of them are confusing and require extensive documentation. Call us today if you need help filing an appeal with your insurance company!

Pathway Patient Advocates (248) 247-8552

What is a Medical Profile Summary and WHY should YOU have one?

Pathway Patient Advocates Medical Profile Summary

2020 has taught us the importance of preparing for the unexpected.
Think of it this way: You wouldn’t leave the house without a driver’s license, so why would you risk encountering an emergency without having a Medical Profile.  Let me explain more:

So what is a Medical Profile Summary?

A medical profile summary is an up-do-date organized summary that includes your pertinent medical history, contacts, and medical wishes. It is typically 1-3 pages long.  Once this is created it can be easily updated as things change.

Why is a Medical Profile Summary important?

It is important because if you are in an emergency situation, the healthcare professionals will quickly have pertinent information that they need to help care for you best. Another place it comes in handy is when going to see a new doctor or another healthcare provider. It is a great idea to give a copy of your Medical Profile Summary to a family member or friend in case of an emergency. 

What do you do with a Medical Profile Summary?

A good place for a Medical Profile Summary is in your purse/or wallet and somewhere easily accessible in your home. As mentioned, it is also a good idea to give a copy to a  family member or friend.

Doesn’t your doctor already have all this information?

Maybe.  In today’s healthcare industry, patients often see various providers at various health care facilities, hospitals, urgent care facilities, outpatient surgery centers, etc.  While technology has improved how many of these communicate and share information about joint patients; there is often information that is missed as well as a very large amount of information in an unorganized arrangement. Also not all healthcare professionals such as EMS (ambulance) have access to this information. A Medical Profile Summary is a concise brief pertinent summary. The goal is to have you as the patient be up to date on your medical profile as well as provide a more efficient way for health care providers to care for you. 

How do you obtain a Medical Profile Summary?

Pathway Patient Advocates can help.  We can create a medical Profile Summary for you as well as provide it in a format that you can easily update as needed.  Contact us to learn more.  (248) 247-8552.

HMO, PPO, ACO, PCMH, FSA, HSA… What do these all mean???

pathway patient advocates
pathway patient advocates

Most of us think that insurance coverage is confusing enough, well throwing in some more abbreviations does not make it any clearer.  These abbreviations have been around for a while, yet many of us really have no idea what they stand for, what they entail, and which ones they currently are a part of. Open enrollment will be here before we know it, so here is a brief breakdown on what these abbreviations actually mean:


Stands for Health Maintenance Organization.

If you belong to an HMO, then you are limited to receiving care from providers in that specific network.  HMO’s also put an emphasis on primary care, making the primary care provider a form of gate-keeper, requiring referrals. 


Stands for Preferred Provider Organization. 

If you belong to a PPO plan then you have the option to receive care from providers that are outside of the “preferred network,” but likely will have a higher deductible. Also, referrals are typically not needed.

FSA (flexible spending accounts) and HSA (health savings accounts) are consumer-driven plans that allow you to have more control over how you spend your money on health care.


Stands for Patient-Centered Medical Home. 

A practice must meet certain standards to become a patient-centered medical home. This often involves bundled payments, where a fixed amount is paid per month.  One goal of PCMH is to promote more efficient care. 


Stands for Accountable Care Organization. 

This is an organization that includes, not only a primary care practice but hospital and specialty care as well.  The goal is to improve coordination by working together to provide high-quality care.

So, which plans should you have, or do you have?  Well, it depends on several factors such as your age, current health, living situation, and much more. 

We can help clarify it all. Contact us today.  Advocate@PathwayPA.com

Premiums. Deductibles. Co-insurances. Co-Payments. Out of pocket maximum.

What do all these things mean? Medical billing can be so complicated, and it is important to understand these terms when selecting an insurance policy and paying outstanding medical bills. Here is a breakdown of common billing terms you will encounter.

Premium: This is the amount that you, your employer, or both combined, pay monthly for your insurance plan.

Deductible: This is the amount you must pay yourself before your insurance begins to pay for services.

Co-insurance: This is a percentage of a service amount that you are responsible for.

Co-payment: This is a set amount that the patient is responsible for at each office visit.

Out of pocket max: This is the maximum amount that you are required to pay for the duration of your plan.

Pathway Patient Adovcates can help with medical bills

It is imperative that you can recognize the difference between these terms. Some common questions individuals have when they review bills from their healthcare providers are:

“Why am I getting a bill if I already met my deductible?” Meeting your deductible does not mean that you will not owe any more for the remainder of your plan. This could be attributed to multiple things such as your co-pays and co-insurance.

“I paid my co-pay when I was at my visit. Why am I getting another statement?” Most of the time, co-pays are not all you owe for office visits. If you have not met your deductible yet, you may be receiving a statement for the full amount of the office visit. If you have met your deductible, and paid your co-pay at your office visit, you may be getting a statement for 30% of the bill, which would be reflective of your co-insurance.

“This plan has an out of pocket max of $50,000. Will I have to pay that full amount if I choose this policy?” In short, NO! You may not ever reach your out of pocket maximum. The amount you pay throughout the year, aside from your premium, varies on how often you utilize healthcare services Many factors play a role in healthcare expenses annually, but an out of pocket max is not a required payment amount.

If you are struggling to choose the right insurance plan or understand your incoming bills, we can help! Give us a call to make sure you are selecting the plan that is right for you and your needs or to make sure you are not overpaying for your medical bills.

Cancer During COVID19


Life during the COVID pandemic is filling us with uncertainty and fear.  If you or a family member are diagnosed with Cancer or are a Cancer survivor, you likely have even more questions during this time. Today we address some common questions that you may have:

Am I at an increased risk of contracting COVID19  if I have Cancer?

Anyone that is exposed to the COVID19 virus has an increased risk of contracting the virus.  Having cancer does not increase your risk of contracting the virus, however it does typically increase the risk of experiencing a serious illness if COVID is contracted. There is also a possibility that immunocompromised (which often includes cancer patients) patients are infected with the virus for a longer period of time.  Each day, we learn more about the virus.  The CDC website  https://www.cdc.gov/coronavirus/  is a great website for updated information.

Am I less likely to survive through COVID19 if I contract it?

Patients with Cancer are considered to be higher-risk of becoming severely ill if they are infected with COVID.  This is because a cancer patient’s immune system is often weakened by cancer or cancer treatment, such as immunotherapy.  Of course, each and every patient is different.  If you had cancer treatment in the past, you may have a normal immune system now.  If you are unsure about what precautions you should take, it is a great idea to contact your oncologist to obtain his or her recommendations.   

What about my family members?

Family members, especially ones living with you, should take extra precautions against contracting COVID, to help avoid spreading the virus to a cancer patient. 

What can I do if I am having difficulty gaining access to proper Cancer Care during this COVID Pandemic?

Hand turns a dice and changes the expression “Questions no Answers” to “Questions and Answers”.

TImely cancer care is essential to support appropriate quality of life and help provide the best possible treatment outcomes.  If you are having difficulty gaining appropriate access to care,  we can help.  Pathway Patient Advocates specialize in cancer navigation. We can assist with navigating all aspects of your cancer diagnosis.  Call or email us anytime.  http://pathwaypa.com/contact/

Have you Considered a Clinical Trial?

Perhaps you or a loved one just got diagnosed with the dreaded “C” word.  Or perhaps you have been battling cancer and the treatment it is just not working or not tolerable.  There are lots of possible options and it is your right to know about them to see which option may be best for you, and this includes a clinical trial.

What exactly is a Clinical Trial?

A clinical trial is a medical research that involves people. There are 4 different phases of clinical trials. Now the big question… Why would participating in a research benefit you?  Well, because it allows you to have access to medications or devices that are not yet available by all healthcare providers to prescribe (not yet FDA approved).  Said another way, it makes medication or treatment available to you that is not yet on the market. That is because it is still in the testing phase.  That may sound scary, and I’m guessing that the next question that pops into your head is, is it safe?  Clinical Trials in the US require that stringent guidelines be followed prior to being approved.  Also, very detailed qualification measures are set in place to ensure that the patient’s who are participating meet the appropriate criteria.  Frequent monitoring is also enforced.  These guidelines are set in place to allow the safest possible environment.  In most cases, a patient is able to drop-out of the study at any time.  Also, each trial is different.  That is why it is so very important to understand the trial very clearly before making a decision.  There are hundreds of thousands of clinical trials worldwide.  Careful consideration is necessary when considering a clinical trial.  Appropriate questions should be asked to see how you (or a loved one) could benefit from the clinical trial.

How do I pay for it?

Several insurance companies, including Medicaid and Medicare, will cover clinical trials. However, it can be very cumbersome obtaining proof of this approval to the proper facility running the clinical trial.  If you don’t have insurance or your insurance does not cover the clinical trial, there is often other assistance available.  Don’t dismiss a clinical trial because you have been told it is not covered.  This happens ALL TOO OFTEN, and most times that is incorrect. Please talk to a patient advocate first.     

Is it Worth it?

There are several scenarios where a clinical trial is a success and a patient’s life is prolonged, sustains a better quality of life, or even goes into remission.  Yes, amazing outcomes can be achieved… and that is the ultimate goal!   Of course with a clinical trial, there are no guarantees that the trial will provide successful results.  That is why it is important to thoroughly review your clinical trial options prior to applying for one.  

Why can’t I just ask my doctor?

While talking to your physician is a good idea, physicians are not always aware of the extent of clinical trials available and the methods of dealing with the often hurdles to qualify for them.

Where do I start?

Pathway Patient Advocates is here to help; putting the focus on your quality of life goals and offering you a better understanding of how clinical trials work. We will help guide you through the process of reviewing clinical trials, as well as the qualification process.  The diagnosis of cancer is burdensome enough, let us help you ease your journey. Talk to us: http://www.PathwayPA.com