by Mark Zatyrka

Published: LifeLines for Health, vol. 3 (Summer 2014)

Over the past ten years our bleeding disorders community has been dealing with the major issue of not having access to qualified factor providers. Many families are losing their choice of providers, or at best being frequently challenged in that choice.

When a member of the bleeding disorders community finds a good HHC (home healthcare company, also known as homecare or home infusion company, specialty pharmacy, and for the sake of this article, HTCs who sell factor through its’ 340B program), they tend to grow very tight bonds and have a level of comfort and trust with their HHC. It can be invaluable to have someone who you can always call, 24/7, who knows your exact needs and preferences, your history, etc. Having a reliable HHC can ease the burdens that come with living with hemophilia and its’ complications, such as an inhibitor. It is important that when it comes to the health of your child or yourself, you know the right factor will arrive at the right place at the right time and should an emergency arise, your HHC will be there for you.

This reality is all especially true for families living with an inhibitor, who may need even more specialized and personalized services. You need to be able to have access to a company who knows inhibitors inside and out. You have enough to deal with and no one has the time to explain every month what an inhibitor is, why you need so much factor, why you need multiple brands of factor, what a bypassing agent is and so on.

Accessing the Situation

Before you begin to fight the battle with an insurer who won’t let you use the HHC you trust and are comfortable with, it can be helpful to know why they are making the decisions they are making.

There are usually two reasons why an insurer will not allow a subscriber, who has out-of-network benefits, to use the HHC of their choice.

1. The insurer signed a “one-stop-shop” deal with one or two large pharmacies

These pharmacies may not have the lowest per unit price on factor, but the insurer sees value in the pharmacies’ pricing on all the drugs across the board as well as cost savings in only having to deal with one or two pharmacy providers.

2. “Vertical Integration”

This trend is one of the scariest in healthcare today. One definition states, “vertical integration is where the supply chain of a company is owned by that company.” In healthcare, vertical integration happens when the insurer owns the pharmacy benefit manager (PBM), the pharmacy, and even the hospital. For example, Xyz Insurance Company tells all their subscribers with hemophilia that they need to use Xyz Specialty Pharmacy if they want their factor paid for. This is a huge conflict of interest issue and we, the patients, are the ones who suffer. Like the above reason #1, the pharmacies have zero incentive to provide quality service. Once insurers remove your ability to bring your business elsewhere, it no longer matters if you are happy.

Because of these two reasons, you can see why getting the insurer to make an exception for you is such a hard battle to win.

We always hear that insurers are doing what they are doing to “control costs,” but when you look at the big picture, it is clear that it is much more about increasing profits than it is about controlling costs.

In the past, a HHC could offer a lower per unit price for factor in efforts to work with families to keep them on their services. In the two reasons listed above, neither one cares about the per unit price. HHCs today rarely if ever set their reimbursement price. Insurers decide what they will pay and that’s what HHCs accept. In fact, most insurers will not even accept lower rates when offered. When we have a client at AHF who will need large amounts of factor, we usually contact the insurer to try to negotiate a lower rate. Surprisingly, insurers have never taken us up on it. We get the sense that they do not want to create more paperwork and exceptions that they need to keep track of. We have even offered to accept a much lower rate to help a family stay on our service and again, that offer has always been declined. These experiences prove the “per unit price” is not the insurer’s priority when choosing which HHCs their subscribers are allowed to access.

Below are some tips you can try when your insurer is preventing you from choosing a new HHC or prohibiting you from staying with your current HHC. But keep in mind, the way insurers and PBMs are set up now, these battles are lost more than they are won, so the odds are stacked up against you. (But we are used to that, right!)

Tip 1: Know your plan

You can ask your HR department or call your insurer’s Customer Service dept. and ask for a written copy of your “Certificate of Coverage” (COC). This should be provided free of charge. This document explains the health benefits you and your dependents have under your plan. It details the services that will and will not be covered. This is a large document, usually 50-200 pages long. The 1-2 page outline of your co-pays and deductibles has some good information, but in order to really know what your rights are and how your factor is billed, you need your full COC. Every insurer is different, every plan type within the insurer is different, and every individual plan can be different.

Tip 2: Be prepared

If you are told a change is happening, be sure to place your monthly factor order with your current HHC prior to the deadline given to you by your insurer. You do not want to be left without factor and need to order from your insurer’s preferred provider. Not only can it take a week or more to get set up with these big PBMs, it also becomes nearly impossible to get permission to switch back to your preferred HHC once you place an order with the insurer’s preferred provider. Verifying your insurance, waiting on your physician to send over your prescription, waiting on prior authorizations and/or pre-certifications and delivery time all can take time to happen. Make sure you have adequate factor on hand for the transition.

Tip 3: Find out if your HHC is willing to fight for you?

It is difficult enough to win these battles. You really need to have your HHC fight for you because this process can consume many hours. Who you need to talk to, what questions do you need to ask, and how to ask those questions are all very important. Your HHC needs to put in the hours, and then be willing to assume some level of risk.

Tip 4: Do not take their word for it

Many times you will receive a letter from your insurer informing you that you will no longer be able to use your current HHC and you will have to switch to the insurer’s preferred provider. Some of these letters are real and some are a scare tactic. You and your HHC should call to see if there are any changes to your plan. A lot of times there are not. It is always good to get the necessary prior authorizations or pre-certifications before shipping just to make sure.

Some treatment teams will recommend their patients call their insurer to find out which providers they can use, which is definitely the easiest path to picking your HHC. However, if there were a particular HHC you would like to use, I would not recommend calling your insurer. They will tell you who they want you to use. I would suggest calling the HHC you would like to use and ask them to run your insurance information. A lot of times the HHC can bill differently, such as out-of-network, through a third party payer (TPA), or through your medical

plan, which may then allow you to use them.

Tip 5: Find out if you have out-of-network benefits

This information can be found in your COC. If you or someone in your family has a chronic illness, I always recommend picking a plan with out-of-network benefits, such as a PPO, if you can afford the higher premiums. It not only can affect which HHC you are allowed to use, but also which doctors and which hospitals you are allowed to go to for care.

If you do have a plan with out-of-network benefits, it becomes very difficult for insurers to

prevent you from using the HHC of your choice. Unfortunately insurers still find a way to deny people their out-of-network benefits even when they pay extra to have those out-of-network benefits. Some payers have moved factor to their pharmacy benefit, which requires you to use their preferred pharmacy (that they usually own), or they can simply “carve out” hemophilia and mandate which provider people with hemophilia are allowed to use, which is a discriminatory practice.

That said, many plans with out-of-network benefits will still allow you to choose your HHC. They may just give you and your HHC the runaround for a while. That is why it is so important to have your COC so you can recite the actual verbiage of your plan.

Be aware that when you do exercise your out-of-network benefits, there is usually higher co-pays or deductibles. Ask your HHC if they have a hardship program or if they work with the manufacturer of the brand of factor you use, as almost all of the manufacturers have generous co- pay assistance programs and patient assistance programs (PAPs).

Tip 6: Find out if your plan is fully-funded or self-funded

Fully-funded plans are your traditional plans. Self-funded plans are usually plans offered by large employers where the employer pays the claims themselves and they hire an insurer to administer the plan. Again, this can be found in the COC. Employers with self-funded plans usually have an additional insurance policy specifically to offset the cost of an employee with a high cost disorder, such as an inhibitor.

There are pros and cons to self-funded plans. A con for self-funded plans would be that they are not regulated by the government. So they could decide not to cover factor. That is usually not the case because good employers want happy employees. But it does happen. That said, the fact that the employer can have a lot more say and has the power to make exceptions would be a major pro for self-funded plans. So if you have a self-funded plan, you would want to go to your HR department and tell them how important it is for you to have access to your HHC. If they value you enough, they can make that change.

Tip 7: Find out if factor is covered under your medical benefit or your pharmacy benefit

Factor used to always be covered under the major medical benefit. The trend lately has been to

move factor over to the pharmacy benefit. Insurers have a bit more control when factor is billed on the pharmacy side, but we usually have much more freedom to choose our HHC when it is billed on the medical side. Check your COC. It will tell you which side factor is billed on. It will also tell you if there are exceptions. Often times, if a nurse or professional is doing the infusion, the factor can be billed under the medical benefit, which usually allows you to stay with your HHC. Also, if factor is billed under the pharmacy benefit, you are at risk of paying those high specialty tier co-

pays.

Tip 8: Ask to appeal

If your insurer is telling you that you need to switch to a different HHC, ask if there is an urgent appeal process or special consideration process. Follow that process exactly and act fast...because they do not. You can usually ask your doctor for a letter and your HHC can help you construct a letter from you stating your case. Don’t be afraid to share how difficult life can be, what services you are receiving from your current HHC, and why they are so important. Even though it does not carry the weight it used to, stress how important continuity of care is for your family. Share what you have been through and what could happen if you receive poor services.

Tip 9: Contact your hemophilia patient organizations

Contact your local, state, regional, or national hemophilia organizations and ask for support. Some organizations are definitely more helpful than others. They may be able to put you in touch with the right individuals. Ask if they can help you prepare or defend your case to your insurer or provide you with up to date info on any insurance law changes in your state. They may also be able to put you in touch with other families who are having the same problems, usually with the same insurer. Your voices together will be much stronger than your voice alone. They may also help get the media involved if it’s a big enough issue.