What Is Value Assessment’s Role in Oncology?

What Is Value Assessment’s Role in Oncology? from Patient Empowerment Network on Vimeo.

Jennifer Bright, CEO of Innovation and Value Initiative discusses the role value assessment plays in oncology and explains how it can help get the best patient outcomes possible. 

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Transcript

Mary Leer:

What is value assessment/health technology assessments’ role in oncology? 

Jennifer Bright:  

Well, you know there’s a lot of evolution in the diagnosis and treatment of different cancers, whether it’s breast cancer or now that we have more understanding of biomarkers and things like that, that allow us to be more precise in our treatment of different cancers, there’s a lot of challenges in how do we look at the benefits and the costs, but then how do we weigh in individual experience, how do we bring in these biomarkers, how do we bring in novel therapies now that are very targeted to the individual when traditionally health technology assessment is very much focused on the average, how do we use clinical data, which is primarily about the average patient to answer questions that really have to do with precision medicine. But for oncology in particular, the benefit of looking at health technology assessment is really understanding as new therapies come to market as they, as new therapies arrive on a treatment landscape that has a lot of different options, value assessment can help us understand what are the comparative benefits for whom, and weigh the cost, and of course, cost is a big concern here in the US and globally. 

We want to make sure that what we’re getting is the best patient outcomes for the best investment of our dollars, but what we also know is that, as I said before, the patient journey is very different, and so what might work for the average patient may not work for someone who is a different sub-group, whether that’s from gender or from race and ethnicity, or from age, or from severity of the cancer that we’re talking about, the nuance of that patient experience and their expectations for their care doesn’t get captured in this realm of health technology assessment, and so it makes it problematic to come up with conclusions that fit the need to make decisions, not necessarily at the clinical level, but when we think about health plans, about payers like Medicare or a commercial insurance plan, these entities are trying to figure out how do we use our resources to best effect for the health of the people we care for, the problem is if we’re using the average scientific data or the average patient experience, we may miss the mark for a lot of people, and so that’s one of the sticky parts of this field is, how do we find that balance point between coming up with a picture of  benefit versus cost that fits the average situation versus when do we need to look at things that are more personalized and take into account things that are not well-understood in our clinical data.

What is Value Assessment?

What Is Value Assessment? from Patient Empowerment Network on Vimeo.

Jennifer Bright, CEO of Innovation and Value Initiative breaks down what value assessment and/or health technology assessment Is and how they are both used.  

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Transcript

Mary Leer:

What is value assessment/health technology assessment and how is it done? 

Jennifer Bright:

Mary, thanks for asking that question. You know, value assessment is a term that’s primarily used in the US and internationally, a wider term is health technology assessment, but they refer to the same thing, which is really an evaluation of health technologies that could be drugs, devices, medical interventions, and looking at the benefits of those interventions versus the costs. So that’s really the simplest definition. But that’s probably the most simple aspect of this field, it really has to do with economic analysis and thinking about how we compare the benefits to a person’s health outcomes and their quality of life versus the cost of what those interventions might cost to an individual’s care to a health plan and to society. As far as how it’s done, as I said, it’s a pretty complex area of research primarily done by health economists, and involves a lot of data, a lot of complex formulas and estimations and modeling to derive what people conclude as some kind of formula that helps us understand complex data and helps us understand those benefits versus costs. The biggest challenge with the field of value assessment and health technology assessment is that we don’t always have the best data to plug into these formulas. And so when we think about data in the realm of oncology care, for example, people’s experience in their care journey might differ their demographics and their genetics might differ and how their disease expresses itself, that the interventions are different and the costs are very different, and so when we use a simplified method like health economic research to try to come up with answers, what we have to realize is that we’re trying to simplify a lot of complexity and that makes it a very challenging environment, and one in which there’s a lot of disagreement about what’s the best method to do this work.

What You Need to Know About Non-Medical Switching

Six in ten adults in the US have a chronic disease. Chronic disease is defined as heart disease, cancer, chronic lung disease, stroke, Alzheimer’s disease, diabetes, chronic kidney disease reports CDC.gov . With so many people having to manage chronic disease, the key is finding the right doctor. Finding the right doctor is very personal, several factors play a role in this decision including communication style, personality, availability, and of course competence. The journey is not over once a good physician is found. The patient and physician spend a lot of time and effort finding the proper medications to treat or manage the symptoms of chronic disease. For many conditions such as hypertension and diabetes, it can take trying several different medications to get the best result for the patient. 

Now imagine after many months or even years, the patient and doctor have found the correct medication regimen. The patient has improved their quality of life and eased the fears that come with chronic illness. Along comes the patient’s insurance company, telling the patient that their medications are no longer covered by their plan. Now the patient and doctor must start over to find new medications that may not be as effective not because their medicines are not working but because of cost. The insurance company has put themselves in the middle of the patient-physician relationship, this is an example of non-medical switching. Non-medical switching of medication, whereby a patient’s treatment regimen is changed for reasons other than efficacy, side effect, or adherence, is often aimed at reducing drug costs reports ncbi.nlm.nih.gov . 

Insurance company policies, like step therapy and non-medical drug switching, that prioritize cost-curbing over patient needs and a physician’s medical judgement can seriously compromise patient safety reports acponline.org. Insurance companies can use several of these cost cutting tactics on the patient. The first and most obvious method is when the medication regimen that the patient has been on is suddenly no longer covered under the patient’s formulary. Insurance companies can also decide to increase the patient’s copay, making the medication too expensive for the patient to afford. Most commonly, insurers use therapy tiers or step therapy to define what the out-of-pocket copay is for medication. Tier one is where the plans usually begin, and this covers generic medication and has the least out of pocket for the insured. Each tier goes up in cost related to brand name drugs and if they have generics available. The most expensive tier to the insured is specialty drugs for serious illness. Step therapy is often called fail first therapy. These policies restrict coverage of expensive therapies unless patients have already failed treatment with a lower-cost alternative reports healthaffairs.org . 

Although formulary restrictions may decrease drug costs, several studies have demonstrated that total healthcare costs remained the same or increased reports pharmacytimes.comChanges to longstanding drug regimens for patients require more doctors appointments and lab testing to get the disease symptoms stabilized again. Often, the patient needs to use the services of an emergency room and a hospitalization to get symptoms under control. The newly prescribed medications forced upon the patient and doctor can have new side effects and medical complications. Generic medications are pushed upon the patient by the insurance companies and often doctors are offered incentives to prescribe those medications. The problem is that not all generic drugs are made equal. Some can be more or less potent than the medicine they’re mimicking, release doses into the bloodstream incorrectly, or contain impurities- sometimes to dangerous effect reports pharmaceutical-technology.com . 

Chronic illness is by definition long-lasting and should be managed by the patient and doctor. When insurance companies cross that boundary and insert themselves into the middle of that relationship, there are steps the patient can take to protect themselves. It is important to find a doctor that is always easily accessible to communicate with. A doctor’s office with an after-hours line and a patient portal available make it easier to communicate prescription and insurance issues as they arise. A patient can reach out to state law makers for help in instituting legislation to regulate insurance companies. Legislation needs to be in place to protect the patient and guarantee that medications can be prescribed by their doctor for ongoing conditions. The medications need continued coverage if the patient has been on them during the previous and current year. Patients can reach out to advocacy groups to seek information on what legislation is enacted in their state. Let my Doctors Decide is a national partnership of leaders across health care working in support of a simple goal; treatment decisions should be made by patients and trusted health care professionals, not insurance companies or pharmacy benefit mangers reports letmydoctorsdecide.org . Finally, the patient’s insurance companies have an appeals process in place for patients whose medications are no longer covered. 

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References:

https://www.keepmyrx.org/issues/non-medical-switching/

What Is the Difference Between White, Brown, and Clear Bagging?

What Is the Difference Between White, Brown, and Clear Bagging? from Patient Empowerment Network on Vimeo.

White, brown and clear bagging all refer to the days ways in which specialty medications can be delivered. Watch as Joanna Morales, Esq, CEO of Triage Cancer explains the differences and shares more about the new standard of gold bagging.

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Transcript

Diahanna Vallentine:  

Could you break down the difference between white… We’re gonna switch gears a little bit between white, brown and clear bagging? I had never heard these terms before. 

Joanna Morales:  

Yeah, so bagging actually refers to the way that specialty drugs are being delivered to a patient, and brown bagging, it’s kind of like the idea of brown bag in your lunch, where you’re bringing your own lunch to work or to school. So brown bagging is where the patients are getting the drugs from their specialty pharmacy, and then they’re bringing them to their healthcare provider where the drugs are going to be prepared and where the patient is actually going to take them, like in a chemotherapy clinic. Brown bagging as a process has pretty much been banned and isn’t really used, but white bagging is when a specialty pharmacy actually ships the drugs to where the patient is going to take that, so if they’re going to a hospital, the specialty pharmacy will send the drugs to the hospital. Clear bagging is where the healthcare system where the patient is getting care, they have their own specialty pharmacy in-house, and that specialty pharmacy is delivering the drugs to where the patient is actually going to take them. So, if we’re talking about a larger healthcare system, you might have the specialty pharmacy in another part of the state, but is sending it internally in its health care system to the patient-specific hospital. 

 So that’s clear bagging. There is a new process called gold bagging, which the industry is really referring to it as the gold standard in an ideal world, this would be the best way for patients to get access to their drugs where the specialty pharmacy is actually located in the same building, really, of where the patient is going to get care, so that there is fewer steps in the process of where the drug is being prepared to where the patient is actually taking the drug, and so it also… Again, in an ideal world, all of that’s happening with patient safety in mind and a lack of mistakes and is even timed to the patient’s appointment of time, and so that’s why they refer to it as gold-bagging because it would be the gold standard of care.

What is the Difference Between an Internal and External Appeal?

What Is the Difference Between an Internal and External Appeal? from Patient Empowerment Network on Vimeo.

 Joanna Morales, Esq, CEO of Triage Cancer explains the difference between an internal and external appeal and encourages patients to appeal if they ever need. She shares that only .2% of claims were appealed in 2019 out of more than 40 million.  

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Transcript

Diahanna Vallentine:

What is the difference between an internal appeal and an external appeal? 

Joanna Morales: So, the process for appealing depends on the type of health insurance plan that you have, but if you have an individual health insurance plan or you get a health insurance plan through your employer, an internal appeal is when you go back to the insurance company and you ask them to reconsider. So it’s internal to the insurance company and asking them to take another look to see if they’ll cover your care, but as a result of the Affordable Care Act, every state now also requires those insurance companies to provide access to an external appeal, where you get to go outside of the insurance company to an independent entity, and they’re going to take a look to see whether or not the care that’s been prescribed to you is medically necessary. And if they decide that it is, that decision is binding on the insurance company, which means that the insurance company is going to have to cover that care, and we know that about 50% of the time on average across the country, external appeals are successful for patients. Unfortunately, very few patients actually go through the appeals process, we know based on the data that in 2019, just looking at market place plans, more than 40 million claims were denied, but only .2% of those claims were appealed and not even to the external appeals level, just through the internal appeals process. So, when you think about 50% of the time external appeals are successful, when we’re talking about 40 million claims, we could estimate that 20 million of those claims were patients who either didn’t get the care that they were prescribed by their healthcare team because they couldn’t afford to pay for it out of pocket or they paid for it out of pocket. And when we’re talking about the financial burden of a cancer diagnosis, not appealing, those denials is certainly contributing to that financial burden, and so we want people to understand their rights to appeal. 

Diahanna Vallentine:

Can we go back really quickly to the appeal process, have a quick question, So every state then has an external appeal program, will every patient get notification that they can go outside of the internal appeal process, would they know that? 

Joanna Morales:

Part of the law’s requirements when a patient is sent a denial letter from the insurance company, that denial has to include the information on how to actually go through the external appeals process, so there is a notice requirement. Now, you have to be savvy as a consumer because that notice might be in small print or on the back side of the letter, but most insurance companies do provide this notice, but patients still need to make sure that they’re following the insurance company’s rules for how to access the appeals process, and that includes following the deadlines. And unfortunately, I think when patients are getting a lot of mail from insurance companies and bills from their providers, there’s a tendency to avoid dealing with those bills for a while, and that the mail can pile up, but it’s important to actually open your mail because there might be key deadlines that you’re missing, if you’re putting off reviewing those bills.

How to Effectively Approach the Prior Authorization Process

How to Effectively Approach the Prior Authorization Process from Patient Empowerment Network on Vimeo.

The prior authorization process can be a daunting one and often time-consuming. Joanna Morales, Esq, CEO of Triage Cancer shares how to make this process easier for patients and their loved ones and explains the appeal process you’d go through if your prior authorizations ever were denied.  

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Transcript

Diahanna Vallentine:

So prior authorizations can be time-consuming and lead to delays in treatment, is there any way for patients and their loved ones to speed up the process of getting this taken care of? 

Joanna Morales: I think being proactive, unfortunately, it puts one more things on the patient to have to do to get access to care, but proactively having conversations with your healthcare team to see if they’re going to fill out the prior authorization or if it’s something that you need to do, or if you need to contact the insurance company and find out if you actually need the prior authorization. So, if you’re proactive and you’re communicating effectively with your healthcare team and the insurance company, it will speed up the process to get access to that prior authorization. 

Diahanna Vallentine:

So, let’s just say you did all of that, and then you come back and that prior authorization for that treatment is denied. What can you do when the insurance company denies coverage for your care? 

Joanna Morales:

Well, it’s definitely important that people don’t take no for an answer, and unfortunately most people do. We kind of assume that insurance companies are accurate when they tell us that they’re not going to cover something, but we have the right to appeal that decision, and if we actually appeal these decisions, we are much more likely to get access to the care that is being prescribed to us by our healthcare team.  

Diahanna Vallentine:

Was there any other things when it goes to prior authorizations that patients should know that helps speed things up, whether it’s working through their treatment team, or can they request a particular person to talk to on the phone when they call their insurance companies that may help? 

Joanna Morales:

I think when dealing with prior authorizations, patients can be proactive in communicating with their insurance company about the care that they’re going to receive, and that can include asking if there is a list of when a prior authorization is required for different types of medical care, but you could also potentially ask if there is a case manager at your insurance company who could be your recurring point of contact at the insurance company to help guide you through the treatment that you’re receiving and their coverage of that treatment. But it is important to realize that that case manager works for the insurance company, they don’t work for you, they can be very helpful in providing pieces of information, but it is important just to keep in mind that your case manager might be providing information, but you might still get denied for the care that you’re receiving, and then to know what your rights are with respect to appeals can be really useful.  

Diahanna Vallentine:

Okay, so once you go through the external appeal and the general appeal is denied, can you still appeal that or is that a final decision? 

Joanna Morales:

Generally, and every state’s rules are slightly different once you’ve received a denial in the external appeals process, that is the final say. Some insurance companies have multiple levels of internal appeals before you get to an external appeal, so usually once the external appeal has been decided, that’s the final decision.

What Are Prior Authorizations?

What Are Prior Authorizations? from Patient Empowerment Network on Vimeo.

Prior authorizations are another big issue many patients may encounter. Joanna Morales, Esq, CEO of Triage Cancer describes what a prior authorization is.  

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Transcript

Diahanna Vallentine:

Let’s go into prior authorizations, that’s another big issue, that patients have…What are prior authorizations?   

Joanna Morales:

So prior authorizations are a requirement that an insurance company wants you to get permission from them before you actually get any medical care or get access to a prescription drug, and prior authorizations can be called different things, so they might be called prior auths or pre-authorizations or pre-auths, so if you hear these terms, they mean the same thing, but unfortunately, most interns company is don’t give you a list of the things you need to get prior authorizations for. So, you always have to be proactive as a patient and ask your insurance company if you need a prior authorization for any of the medical care that you’re going to receive, now, if you happen to be getting care at a larger hospital, your healthcare team might actually be submitting the prior authorizations for you, but it’s still your responsibility as the consumer and the patient to be checking if you need that prior authorization because if you don’t, and your healthcare team fails to get the prior authorization, if you get that medical care, then your insurance company could come back and say, we’re not covering that care because you didn’t get the prior authorization. So, it’s always important to proactively find out if you need the prior authorization before you get any care.

The Controversial Conundrum of Co-Pay Accumulators And What to Do About It

Prescription medications can be super expensive so, it’s a good thing that there are assistance programs available to help patients cover some of the costs. Assistance is often provided by charities, nonprofits, or drug manufacturers, and is designed to offset the cost of treatments and medications. The only catch is that there are now other programs in place that seem to negate any of the benefits that the assistance programs provide. 

If it sounds confusing, that’s because it kind of is, but the simplest explanation is this: Pharmaceutical companies, and other organizations, often offer programs to offset the high cost of medications. The programs are known as copay assistance programs, or sometimes coupon programs or copay savings programs. Manufacturers or charitable organizations can cover part of the cost of medications, relieving patients of some of the burden of meeting the cost of their copays and annual maximum out-of-pocket expenses. The assistance provided is capped at a maximum amount, and any contributions the assistance programs make to the cost of the medications can be applied to the patient’s deductible and out-of-pocket expenses until the maximum amount is reached. 

However, in 2018, in response to the copay assistance programs, insurance companies and pharmacy benefit managers (PBMs) created copay accumulator programs. The copay accumulator programs still allow patients to get assistance from the drug manufacturers or other groups, but they prohibit that assistance from being applied toward a patient’s deductible or annual maximum out-of-pocket expenses. So, once a patient uses up any assistance, the patient is still responsible for their entire copay and maximum out-of-pocket expenses before their full insurance benefits kick in. Patients with a high deductible, or a separate pharmacy deductible, could end up paying more over time because it will take them longer to meet their deductible and receive full insurance benefits. 

There are also similar programs known as copay maximizer programs in which the copay assistance maximum amount is applied evenly throughout the year, but still doesn’t count toward the patient’s deductible and out-of-pocket maximum. In the copay maximizer programs, the amount the patient has to pay is more balanced over the year, but it does not lower the overall amount the patient is responsible for paying. 

Since arriving on the scene, the copay accumulator programs have been controversial. Patient advocacy organizations say the accumulator programs are unfair. Organizations such as the Immune Deficiency Foundation (IDF) have noted that it doesn’t make sense that the source of the payment for the medication should matter. If medications are paid for by the patient, the payment counts toward the deductible, but if the medications are paid for by someone else, the payment doesn’t count toward the deductible. Therefore, insurance providers are effectively collecting the deductibles and out-of-pocket maximums twice. In January 2021, the American Society of Clinical Oncology (ASCO) released a position statement regarding copay accumulators and copay maximizers. The ASCO is opposed to the programs and calls them harmful. 

On the other hand, PBMs and insurance providers say that copay accumulator programs are beneficial because they encourage patients to choose lower cost drug options. They argue that it is the copay assistance programs that are unfair because they encourage patients to use more expensive brand-name drugs instead of generics or lower cost brands, which increases premiums. In addition, they claim that, rather than actually reducing the cost of the medications, assistance programs transfer the cost of the medications onto the PBMs and insurance providers, which also leads to increased premiums. 

Either way, it is the patients who are most affected, and some see copay accumulators as blatant discrimination against people with chronic and complex illnesses, such as cancer, because they don’t often have a choice for generic or lower cost medications. These patients rely on specialty brand prescriptions for treatment and recovery. Many also have high deductibles or are required to pay a percentage of the prescription cost rather than a flat amount.  

Studies indicate that the result of copay accumulator programs is poorer health outcomes and possible higher costs to the healthcare system. The extra costs often prevent patients from using specialty therapies or following the doctor recommended treatments. More than one in four specialty brand prescriptions are no longer filled when patients have to pay toward their deductibles for them. One study found that patients who have health savings accounts with an accumulator program for autoimmune drugs filled their prescriptions less often and were more likely to discontinue their prescriptions. Another study found that higher prescription copayments meant that patients, especially older women, were less likely to take their medications as prescribed. Failure to follow treatment as prescribed could be potentially life-threatening for many patients with cancer and other complex illnesses.   

Initially there was a restriction on copay accumulator programs. They could only be used for medications that also had a generic version, but in May 2020 the Centers for Medicare and Medicaid Services (CMS), a division of the Department of Health and Human Services ruled that insurance companies could use the copay accumulator programs without any restrictions. The issue is not settled with CMS and more rulings about copay accumulators are expected. Organizations like the ASCO recommend that CMS should ban the use of the accumulator programs and that federal and state governments should pass legislation banning them as well. They further recommend that insurance companies and PBMs should discontinue the copay accumulator programs.  

IDF is one of the organizations that is trying to ban copay accumulators at the state and federal level. As of spring 2022 Arizona, Arkansas, Connecticut, Georgia, Illinois, Kentucky, Louisiana, Nebraska, North Carolina, Ohio, Oklahoma, Tennessee, Virginia, Washington, West Virginia, and Puerto Rico have passed legislation banning copay accumulators.  

In addition to legislation at the state level, federal help may be on the way. In November 2021, a bipartisan group of congressional representatives introduced H.R. 5801, the Help Ensure Lower Patient (HELP) Copays Act. Part of the bill ensures that copay assistance gets applied toward deductibles or out-of-pocket maximums. However, the last action on the bill was also in November 2021 when it was referred to the subcommittee on health.  

While waiting for the laws to catch up with the implementation of the copay accumulator programs, there are things patients can do to protect themselves from high out-of-pocket expenses. Most importantly, patients need to be aware of copay accumulators, and use that awareness to carefully read their insurance plans before enrolling. It can be difficult to determine if the insurance plans contain copay accumulator programs because the language is often unclear and can lack transparency. The name is confusing, copay accumulator doesn’t exactly describe what the program is, and each provider uses their own name for the programs. Other names include: Out-of-Pocket Protection Program (Express Scripts), True Accumulation (Caremark), and Coupon Adjustment: Benefit Plan Protection Program (United Healthcare). Copay accumulator programs have also been implemented in the middle of a plan year, without notification, so many patients don’t know they have one until they get stuck with a large bill. The best way to find out if a plan contains a copay accumulator or maximizer program is to call the insurance provider’s customer service number and ask them directly. Be sure to specifically ask whether or not the plan prohibits third party (manufacturer, charity, or nonprofit) contributions from counting toward the deductible and out-of-pocket costs.  

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Sources: 

Brooks, Amanda. “Copay Accumulator Programs: What Patients Should Know.” GoodRX Health, June 18, 2020, https://www.goodrx.com/insurance/health-insurance/copay-accumulator-programs-cms-ruling. Accessed May 10, 2022. 

Fein, Adam J. “Copay Accumulators: Costly Consequences of a New Cost-Shifting Pharmacy Benefit.” Drug Channels, January 3, 2018, https://www.drugchannels.net/2018/05/copay-accumulators-costly-consequences.html. Accessed May 8, 2022. 

“American Society of Clinical Oncology Position Statement: Copay Accumulators and Copay Maximizers.” asco.org, January 21, 2021, https://www.asco.org/sites/new-www.asco.org/files/content-files/advocacy-and-policy/documents/2021-CopayAccumulatorsStatement.pdf. Accessed May 10, 2022. 

Immune Deficiency Foundation. “Support the HELP Copays Act and Fight Unfair Copay Accumulators.” primaryimmune.org, December 2, 2021, https://primaryimmune.org/news/support-help-copays-act-and-fight-unfair-copay-accumulators. Accessed May 9, 2022. 

National Conference of State Legislators. “Copayment Adjustment Programs.” ncsl.org, April 4, 2022, https://www.ncsl.org/research/health/copayment-adjustment-programs.aspx#State. Accessed May 11, 2022. 

What is a Co-Pay Accumulator Program?

What Is a Co-Pay Accumulator Program? from Patient Empowerment Network on Vimeo.

Joanna Morales, Esq, CEO of Triage Cancer describes a co-pay accumulator program and shares some states may have protections against such programs.

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Transcript

Diahanna Vallentine:

So, Joanna. What is a co-pay accumulator program? I’ve had patients ask me this question. 

Joanna Morales:

So, a co-pay accumulator program is a program that insurance companies actually use to exclude the financial health that you’re getting to cover your out-of-pocket costs from counting against your deductibles or your out-of-pocket maximum. So this can actually be a huge problem for patients because it greatly increases their out-of-pocket costs. So imagine that you have an out-of-pocket maximum on your plan of $5000, and you have a prescription that costs $5000 for one month, which isn’t unheard of when we’re talking about the cost of cancer care, but you are able to actually get financial help to pay for $3000 of that cost, normally that financial help, which still counts towards your out-of-pocket maximum, so that would mean that you’ve met your out-of-pocket maximum of $5000 for the whole year. So you shouldn’t have to pay any other medical expenses out-of-pocket for the rest of that plan year, but with accumulator programs, the $3000 that you got financial help lift no longer count against your out-of-pocket maximum, and you actually have to face paying that $3000 in out-of-pocket expenses that you will have to pay during the year, so having to pay those additional costs out-of-pocket could greatly increase costs for patients and could potentially drive patients into debt or force them to stop taking their medications because they can’t afford to pay those out-of-pocket costs. Even though these co-pay accumulator programs are becoming more widespread, there are about 12 states now that have some protections around health insurance companies using co-pay accumulators, so this is actually an advocacy opportunity for the cancer community to take a look at how co-pay accumulators are being used by insurance companies. 

Diahanna Vallentine:

So, when a state gives people opportunities to participate that going against their deductibles or their co-pays, then that person no longer has to worry about their insurance if they change insurance or the next year, ’cause all the insurance companies would be going by that law, that state law? 

Joanna Morales:

Every state law is slightly different in how they handle copay accumulators, but generally, there are protections for consumers, so that insurance companies aren’t using copay accumulator programs to increase out-of-pocket cost for patients.

How Do Insurance Companies Cover Prescription Drugs?

How Do Insurance Companies Cover Prescription Drugs? from Patient Empowerment Network on Vimeo.

Joanna Morales, Esq, CEO of Triage Cancer shares how insurance companies cover prescription drugs and discusses financial assistant programs to help with out-of-pocket costs.  

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Transcript

Diahanna Vallentine:

So, Joanna we’re going to talk about co-pay accumulators. Can you tell me how do insurance companies cover prescription drugs? 

Joanna Morales:

Most insurance companies do provide coverage for prescription drugs, but you may still have costs that you have to pay out of pocket when you get a prescription, so first you might have to pay a deductible and that deductible could be specific to your prescription drugs, so maybe you have a $300 deductible for prescription drugs, where you have to pay that amount first before your health insurance coverage kicks in to pay for your prescription drugs, and then you might also have to pay co-payments when you go and pick up your prescription. So, if you’re going to go and pick up an antibiotic, for example, you might only have a $5 co-payment, but if you’re going to pick up a more expensive drug, you might have a $300 co-payment, and co-payments are different from co insurance and cost share amounts and those are two terms that are used in the same way. So it’s a percentage, it’s the difference between what insurance companies will pay for our medical care and what we pay, and more expensive prescription drugs, like specialty drugs, like cancer drugs, are actually paid for using that co-insurance model rather than a co-payment model. 

So, an insurance company is more likely to charge you a co-insurance amount to get those more expensive drugs, so you might be paying 20% or even 30% of those drugs rather than that flat feet co-payment amount. And then you also have an out-of-pocket maximum, and that out-of-pocket maximum is a fixed dollar amount where it’s the most that you’re going to pay out of pocket for your medical expenses during the year. Some insurance companies include prescription drugs in the main out-of-pocket maximum, and some plans carve out prescription drugs and that they have their own out-of-pocket maximum. So, it’s very important for people to understand how their insurance plan treats their coverage of prescription drugs and understand what they’re going to have to pay out of pocket for their prescription drugs. 

Diahanna Vallentine:

Okay, with that. So, when a person looks at the total cost of their drugs, how it’s going to work every year, so the cost, they need to take into a consideration which programs they can get grants, it’s what they considered grants? 

Joanna Morales:

Yeah, so any of the potential out-of-pocket costs that someone might have to pay, there are financial assistance programs out there to help pay for those out-of-pocket costs, so some provide assistance with the co-payments, some will go towards your deductibles or even your out-of-pocket maximums, and there are lots of different types of prescription drug assistance programs, so some come from private organizations, some are specific to the cancer community, most pharmaceutical companies that make the drugs also have co-pay assistance programs. So, there are lots of places to go to look for financial assistance to help pay for those out-of-pocket costs, but what’s important to realize is that if you’re getting help paying for those out-of-pocket costs from one of those financial assistance programs, the amount of money that you’re getting assistance for to pay those costs still counts towards your deductible or your out-of-pocket maximum. So, if you have $500 in a deductible and you get $500 of financial assistance to pay that deductible, it still counts towards your deductible, so you’re not being penalized for actually getting that financial assistance, it helps towards your total out of pocket costs that you’re spending.

How Can We Work with Grassroots Organizations?

How Can We Work with Grassroots Organizations? from Patient Empowerment Network on Vimeo.

Dr. Judith Flores of the National Hispanic Medical Association (NHMA) defines grassroots organizations and shares examples on how to work with them to provide trusted resources.

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Transcript

Sasha Tanori:

Can you briefly describe what a grassroots organization is? 

Judith Flores:

That is an interesting definition to come up with by someone like me, I think what I refer to are people that are working on the ground, people that are working, that have developed their organization, their structure from the community itself. They have within that community, the resources to organize to communicate and to provide other resources to their neighbors and larger community. 

Sasha Tanori: Can you give us an example on how to work with grassroots organizations to better provide everyday trusted resources?   

Judith Flores: Yes, of course. I’ve been doing a lot of work this year related to vaccine engagement and understanding of the COVID vaccine in communities, and I would have been able… I would not have been able to do any of this work without the community-based partners that you call grassroots organizations. I work with community-based partners that are faith-based, that are community-based within regions, and they are always the people that provide the bridge to that community and the entree to be able to be accepted and trusted when I’m giving my messages mostly around COVID vaccination.

What Are Community Healthcare Workers?

What Are Community Healthcare Workers? from Patient Empowerment Network on Vimeo.

Dr. Judith Flores of the National Hispanic Medical Association (NHMA) explains the role of community healthcare workers and how you can identify them.

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Transcript

Sasha Tanori:

What is the purpose of Community Healthcare Workers?  

Judith Flores: A community healthcare worker provides a bridge. They come in different flavors and names, depending on where you are in the country. We call them community health care workers, we call them from promotoras, we call them navigators, they have different varieties of training and experience, but they are the bridge back to the community and back to the patient. They have more time to spend with the patient. They’re able, in many cases, to speak their language and understand their culture, and they’re able to direct them to the resources that will help them get the care that they need. 

Sasha Tanori:

And how can we identify community healthcare workers? 

Judith Flores:

A community healthcare worker comes in various varieties and with various names and titles, and they do have different types of training. The most important thing is community health workers provide that extra time with the patient. It’s been shown in… Actually, in the Journal of Internal Medicine, recently, as recent as 2017, that having a community health care worker integrated into the health care team of a hospital setting does reduce the number of emergency room visits and improves the quality of care, something that we are all judged on. Producing good quality care at lower cost.

Moving from Equality to Equity

Health equality means giving everyone the same opportunities, care, and services.  This has been the focus for laws, polices, procedures, and medical training. This focuses on elimination of differences in health diagnoses and treatments. Health equity focuses on fundamental justice. The goal is to ensure equal access to quality healthcare and good health, even if this requires giving some people more support and resources. Health equity considers different cultures, access to resources, and socioeconomic status. 

Under an equality focused approach, a doctor might offer the same test to everyone at the same interval or provide the same information to everyone. The doctor might also believe that, if they treat everyone the same, they are not behaving in biased ways.  Policies and laws that focus on this can resolve some health disparities, especially when the disparity stems from lower quality treatment, deliberate discrimination, or lack of adequate screening.   

Disease and health disparities cause different but preventable outcomes among groups. These can include race, such as Black men dying more often from prostate cancer due to lack of access to quality care and social inequality. Sexism can lead to the level of pain not being believed. Disparities can also create barriers due to lack of transportation, age, financial status, and literacy levels, to name a few. While current cancer screening guidelines focus on it equality, data indicates that these need to be adjusted to disparities within specific communities. The incidences of preventable cancer and higher mortality are impacted by the type of cancer, geographic location, race and ethnicity, country of origin, and gender. Studies and guidelines also need to expand to add more underrepresented groups.  While studies show that at least half of the patients offered to participate in a trial do, physicians are less likely to discuss a clinical trial with a patient of color. 

 To address the underlying issues and individual needs, public health needs to move toward an equity-based approach. Health equity considers different cultures, access to resources, and socioeconomic status. The goal is to ensure equal access to quality healthcare and good health, even if this requires giving some people more support and resources. Some initiatives are underway to address this.  The Woodlawn Center in Chicago, added a clinic to serve Black men. This has improved the experiences with the health care system, increasing a positive environment leading to increased usage. In Multnomah County Oregon a partnership between nonprofits, government organizations, local health care providers and several community- and faith-based groups was formed to address the specific needs of the local Black and Latino communities.   

We must strive to take equity further by applying justice, where we move to fix the issues. Equity-minded medical professionals must consider how social determinants of health such as access to a healthy diet, stress, and trauma affect outcomes. They must also consider how apparently equal systems lead to inequitable and unjust outcomes. An equity lens moves health systems closer to removing disparities. It also encourages policymakers to think about the myriad ways social environments affect health. 

Until medical schools and training of health care professionals expand to include environmental and social impacts, patients and care partners need to work with the health care professionals to include these factors.  Find out if the testing and screening is based on the “average” person or includes the segment of the population that includes the patient.  Do the “standard of care” recommendations consider the ability of the patient to comply?  For example, a doctor who knows a person has limited access to healthy food may work with the person to strategize ways to overcome this challenge and reduce the risk of health issues. The doctor might also lobby for policies to address this issue. There is no “average” person.  Everyone is unique and the best outcomes come from the medical personnel, patient, and care support working together as a team. 

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References

“What are the differences between health equity and health equality?”, Medical News Today 

Racial Disparities in Cancer Outcomes, Screening, and Treatment”, KFF 

“Equity vs. Equality: What’s the Difference?”, Milken Institute School of Public Health at George Washington University 

Designing Sustainable and Healthy Communities

Just about every aspect of our lives involves strategy and planning. Let’s use moving as an example. We likely plan this move in a way that will create more convenience for our lifestyle.  Are grocery stores close by, a hospital or urgent care, childcare or a school, an interstate for easy access to work or general use? These conveniences can reduce stress and worry associated with difficulties accessing everyday necessities. 

Healthy Community Design was a concept that could break down the barriers between communities and their necessities by establishing convenience to schools, healthcare facilities, and other benefits that should be accessible (CDC, 2014). This was implemented by the Centers for Disease Control and Prevention (CDC). While this initiative is no longer funded, the information provided can still serve value when determining how to improve communities. Being that this initiative is no longer federally funded this places even more importance for communities and local leaders to implement practices to better their neighborhoods. Based on the initiative, the way in which communities are designed could play a role in one’s physical and mental wellness. Obtaining a better understanding of this concept and its importance can help us build and improve more healthy communities. 

Envisioning a Healthy Community Design

Overall, the objective of this concept is to promote good health by planning the outline of the community to create better accessibility for everyday essentials (CDC, n.d.). So what does this actually look like? The CDC listed out a number of benefits such as increasing physical activity by placing schools, businesses, and other essentials in walkable distance; reducing the use of transportation due to decreased distances, improving community morale by implementing centers and spaces to increase communication, and so forth (CDC, n.d.). 

In essence this is all about bridging the gap between disparities. Now of course, in some communities the design landscape will be different. As we know, underserved populations tend to have more barriers within their communities compared to their White counterparts. Therefore the focus will be different especially when looking at available community resources and leadership. We must understand the needs of these communities first.  

For example, in research conducted in South Los Angeles, California under the Healthy Community Neighborhood Initiative (HCNI), it was documented that the community is affected by high rates of preventable diseases, obesity, unemployment, home foreclosure, crime, lack of access to care, and other health inequities  which affect a significant number of African American and Latino people in this area (Brown et al., 2016). The research conducted in this community was completed in partnership with local universities and organizations such as UCLA, Los Angeles Urban League, among others. The groups developed a framework to obtain a better understanding of the health of their community and factors influencing the outcomes. While the research studied a limited number of participants the information can still be useful in identifying factors that influence inaccessibility of resources in other communities.

Why Healthy Communities Are Necessary

Developing healthy communities has demonstrated to play an integral role in its residents’ lives. These types of communities aid in decreasing the disparities experienced.  As previously mentioned, there is a requirement to understand exactly what the community needs in order to develop a strategy to address these issues. It takes a village to make change and support in understanding the needs of the community must come from a community, local, state, and federal level. 

According to the CDC, healthy living aids in preventing chronic diseases and bridging the health inequities gap between ethnicities (CDC, 2017). Federally funded programs such as the CDC’s REACH, is dedicated to addressing such disparities and assisting in reducing them (CDC, 2022a). The REACH program collaborates directly with the community and local partners to make improvements for their residents’ health (mentally and physically), living environments, and overall quality of life. This initiative works because there is involvement from multiple parties in order to reach the community and satisfy its needs. 

So not only is this collaboration important, policies play a role in maintaining these communities. The U.S. is no stranger to policies affecting access to basic needs. An example of this is outlined in the article, “Food Outcry: Dismantling Food Inaccessibility in BIPOC Communities”. This article highlighted how public policies have denied individuals in urban communities access to nutritious foods (Food Deserts) and funding entering the neighborhoods (redlining). How can we develop or maintain healthy communities with discriminatory policies as a barrier? Policies and zoning laws should be developed with the health of the community in mind. Planning and strategic development can help promote a sustainable life for residents (CDC, 2022b). These plans and laws involve creating communities that safely place schools, religious centers, businesses, etc. in close range and promote communication between residents. With developing these policies and laws, engaging the voices of residents helps to identify what will and will not work for the health of their community. 

Doing the Work

We’ve discussed what healthy community design looks like and its importance but how do we achieve it? Developing these neighborhoods will require strategy and planning. What will best benefit the community in need? What types of resources is the community lacking? Is the community safe? These are questions to ask when planning and executing a healthy community design. 

We’ve mentioned implementing policies and resident input to encourage this concept but how can this be carried out? Establishing programs and initiatives to engage the community in design decision making, testing development methods in at- risk neighborhoods; and conducting audits to identify housing and areas to promote physical activity (CDC, 2022b). The CDC also proposed the use of pop ups to obtain a better idea of what the community may or may not want to see permanently (i.e. pop-up shops and events). 

There are a number of ways to improve neighborhoods. The following are tools I propose for improving and designing a more healthy community::

  • Establish pop-up urgent care centers to assist communities with their health needs.
  • Communities and their local leaders can partner with public transportation to create a health rideshare system for easy access to doctors appointments and pharmacies. 
  • Voting and becoming politically involved with the community. Voting is probably the number one tool to make change. We are a democracy and this needs to be utilized more. The changes can possibly be made when electing the RIGHT official. 
  • Partner with local schools, colleges, and universities to host community field days for the youth, maybe biweekly or monthly, to give them something to look forward to. This will encourage physical activity among youth and create a gathering space for the community as a whole. 

Developing a healthy community is definitely possible. It just takes collaboration, strategy, and planning. Where people live has the ability to affect their overall quality of life. To ease associated stresses communities can work together to create a more sustainable life. Although the Healthy Community Design initiative is no longer federally funded, this does not mean the ideology can no longer be carried out. This initiative has the ability and has made changes in lives and the health of residents within communities across the US. We must continue to work together to build communities that promote longevity for generations to come. 


References:

Brown, A. F., Morris, D. M., Kahn, K. L., Sankaré, I. C., King, K. M., Vargas, R., Lucas-Wright, A., Jones, L. F., Flowers, A., Jones, F. U., Bross, R., Banner, D., Del Pino, H. E., Pitts, O. L., Zhang, L., Porter, C., Madrigal, S. K., Vassar, S. D., Vangala, S., Liang, L. J., … Norris, K. C. (2016). The Healthy Community Neighborhood Initiative: Rationale and Design. Ethnicity & disease, 26(1), 123–132. https://doi.org/10.18865/ed.26.1.123

 

Center for Disease Control and Prevention (2014). CDC’s Built Environment and Health Initiative: Why invest?. https://www.cdc.gov/healthyplaces/why_invest.htm 

Center for Disease Control and Prevention (n.d.). Healthy Community Design. https://www.cdc.gov/healthyplaces/docs/Healthy_Community_Design.pdf

 

Center for Disease Control and Prevention (2017). NCCDPHP: Community Health. https://www.cdc.gov/nccdphp/dch/about/index.htm

 

Center for Disease Control and Prevention (2022a). REACH. https://www.cdc.gov/chronicdisease/resources/publications/factsheets/reach.htm

Center for Disease Control and Prevention (2022b). Land Use and Community Design. https://www.cdc.gov/physicalactivity/activepeoplehealthynation/everyone-can-be-involved/land-use-and-community-design.html

How Can We Address Language Barriers?

How Can We Address Language Barriers? from Patient Empowerment Network on Vimeo.

Dr. Judith Flores of the National Hispanic Medical Association discusses the importance of addressing language barriers so people with cancer can receive the best care.

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Transcript

Sasha Tanori:  

Over the past few years, how have you seen language barriers addressed and how can we continue addressing them? 

Judith Flores:  

I think we have to understand that addressing language barriers is extremely important. It can be fatal for someone if they don’t access care because they cannot get it in their own preferred language. Of course, we have some federal funds through the Accountable Care Act that allow us to have resources for limited English proficiency, but to be honest, the best thing to do is to try to develop a workforce that looks like the patients they serve, speaks their language and understands their culture.  

I’m going to quote from the cdc’s definition of health equity. Health equity implies that every person has the opportunity to attain their full health potential. No one is at a disadvantage because of social position. That’s a tall order, and that’s something that we all have to work towards, especially now, and we want to add the piece of health justice which implies that people, all people are valued and that health and reconciliation is a goal for all of us.