Gathering Meaningful Data

Hemophilia and Bleeding Disorders Toolkit

Building the Business Case: Gathering Meaningful Data

Employers who have experience with hemophilia in their covered populations recognize the high costs involved. However, they may not recognize that treatment involves a class of therapeutic drugs that is not highly managed. Approximately 90% of the total cost of hemophilia is related to specialty drug spend, however adequate data and information on these claimants are not routinely provided by PBMs and insurers. For payers and employers to effectively manage their hemophilia spend, pertinent and timely data is needed.

Figuring out how to quantify current total cost of care and determining cost saving strategies starts with drilling down and looking at how care is being delivered.

  • Is care provided by a PCP, general oncologist/hematologist or a hematologist within a Hemophilia Treatment Center?
  • Is a review of the specialty pharmacy benefit design in place to determine if there are opportunities for more effective management?

Another factor to consider regarding the impact of hemophilia is that members with the disease often self-inject medication at home. This information is not always captured using traditional sources such as medical or pharmacy claims data. Gathering this information often requires working with vendor partners (e.g. PBMs and specialty pharmacies) to make sure they are collecting actual script data and patient bleed logs.

Review the steps on this page and/or download the Employer Checklist to learn what the prevalence of hemophilia is in your population, evaluate your current strategy related to hemophilia and know what steps can and should be taken with suppliers/vendors to improve overall quality of care and reduce related costs. Even if all the steps cannot be completed, there is value in completing as many as possible.

Using Data from Hemophilia Treatment Centers

Hemophilia Treatment Centers (HTCs) have a wide range of data reporting capabilities which can be requested by employers. Data points can include the following:

  • Patient classification by diagnosis
  • Total cost of clotting factor
  • Quarterly assay management reporting that includes target prescribed dose versus dispensed dose deviation
  • Dose management reports that include patient bleed logs, doses on hand and extra doses shipped (including the reason for extra doses)
  • Whether a patient had any ER visits or hospitalizations related to hemophilia
  • ER avoidance report
  • Adherence monitoring
  • Total cost per patient
  • Number of patient contacts (clinic visits, follow up, telemedicine, email, etc.)

Employers should work with their claims administrator, PBM/specialty pharmacy and/or HTC provider point-of-contact to capture as much of this data as possible. Gathering this information will help employers evaluate the effectiveness of an existing program, which could lead to plan design changes. Experts from the National Hemophilia Foundation and Hemophilia Alliance are available to assist in this evaluation.

Steps Employers Can and Should Take with Suppliers

The impact of hemophilia on your company’s spend and/or hospital and ER use can be verified with ICD-9 or ICD-10 codes, hemophilia drug J-codes and/or NDC numbers. Work with your vendor partners, e.g. PBMs, health plans, specialty pharmacies, to collect the information below.

Step 1: Know the number of individuals with hemophilia currently being covered as primary and secondary by your plan.

Step 2: Determine the specialty drug spend related to hemophilia; clarify whether the spend is captured under the medical plan, pharmacy plan or both.

Step 3: Ask your health plan/claims administrator to pull ER and hospital claims data with hemophilia as the primary diagnosis code.

Step 4: Evaluate your current benefit plan design to determine if:

  • Procurement and administration of clotting factors are being billed under medical and/or prescription drug benefits
  • Sufficient specialty pharmacy options are available, ideally one HTC specialty pharmacy (if available) and one other specialty pharmacy
  • Members can choose from more than one type of health plan (e.g. PPO, EPO, HDHP, etc.) and how member financial responsibility is administered under each
  • Appropriate case management is being provided to members with hemophilia and by whom

  • Prior authorization process is in place and details of the qualifying authorization criteria (if not, how are providers held accountable?)

  • Co-pay accumulator adjustment program is deployed (not recommended for use with high cost/high value drugs which have no generic equivalents)
  • Pharmacy benefit network is exclusive or open (if drugs are billed under the pharmacy benefit)
  • Contracted specialty pharmacies dispensing clotting factor products adhere to MASAC #188 guidelines

Step 5: Hold your vendors accountable.

Conduct a retrospective review to ensure that your vendor partners are doing what they say they are doing and require quarterly reports with specific requirements, including:

  • Assay management performance reviews
    • Identify target dose as written compared to actual dispensed dose
    • Identify current contracted allowable +/- over target
  • Dose management performance reviews
    • Ordered versus shipped - oversight/reporting to confirm that dispensations match shipments
    • Patient bleed logs (collected and reviewed) to determine medication adherence and inventory on hand at the patient’s home
  • Whether auto-shipping has been disabled

The National Hemophilia Foundation offers support to employers at no cost. A consultant/broker may also be able to conduct a retrospective review. Be sure to ask if any fees will be charged for this before starting.

Step 6: Check stop-loss policy (if utilized) and claims to confirm:

  • Whether medical and/or prescription drug claims are covered in combination or as separate stop-loss thresholds
  • Amount of coverage and qualifying thresholds for stop-loss coverage to begin
  • Types of claims covered and timeframe for coverage
  • Number of treatment episodes reaching payment thresholds over three individual but consecutive plan years
  • Total amount of coverage provided for each