It’s a challenge that continues to keep many pharmaceutical leaders up at night: how to advance patient-oriented programs in an industry addicted to the use of middlemen. A myriad of players, including PBMs (pharmacy benefit managers), wholesalers, specialty pharmacies, and other “hub" service companies are focused on disparate priorities often rife with inherent conflicts of interest.
In a sharing economy where all transactions root with the ultimate consumer, it seems a particularly outdated approach in the context of rare disease. With only an estimated 550 orphan drugs approved by the FDA since the Orphan Drug Act of 1983 and patient populations ranging in size from 50 to 200,000, there are inefficiencies with the standard multi-channel partner approach that demand further examination.
Best Practices for Rare Disease Patients
First the cost. According to Evaluate Pharma’s 2015 Orphan Drug Report, orphan drugs make up a small, but important portion of worldwide brand drug sales, estimated to be $114 billion or 16% of worldwide brand prescription drug sales in 2016. By 2020, the global cost of orphan drugs is expected to reach 20% of non-generic drug sales (projected at $879 billion).
Milliman research, commissioned by Dohmen Life Science Services (DLSS), a nationally recognized BPO (business process outsourcer) serving the life-science industry, recently examined the incremental costs for orphan drugs in aggregate, which was inferred based on the difference between manufacturer receipts and payer cost. For the more than 15 orphan drugs studied, researchers found payer cost was over 17% higher than manufacturer revenue.
If the same ratio of payer spending to sales observed in the report’s analysis applies to all orphan drugs, it’s estimated that payers are covering $149 billion in markups (17% of $879 billion) that could include:
wholesaler margin,
pharmacy margin,
PBM spread (i.e., the difference between what the PBMs charge their customers and what they pay the pharmacies), and
PBM retention of a portion of rebates.
That’s $149 billion going to maybe six different players that sit between a life-science company producing critically important therapies and a rare disease consumer that relies upon them. That’s $149 billion that could contribute to a lower cost of healthcare in a country that pays double what other countries pay, yet does not see healthier outcomes.
Then there’s the care. Beyond cost concerns, fragmented hub and delivery operations create service gaps and an inconsistent experience for patients and caregivers. Poor cooperation across a standard multiple third-party vendor network leads to the absence of standardized patient support protocols, refracted patient education efforts, and a disjointed patient profile, all contributing to an inefficient, ineffective and difficult to use patient experience.
The World Health Organization describes treatment adherence as a “global epidemic" especially true in the rare disease space. While research into orphan drug adherence is limited, Global Genes reports that adherence in the rare space can vary from only 58% to 65%, meaning there is still a considerable amount of work to be done to help people properly manage their therapy.
Coordinated and consistent support become critical, not only to the patient, but also to the family caregiver who often plays the vital role of patient advocate. Given the difficulty of obtaining accurate diagnosis (averaging eight years for many rare diseases) and the fact that 80% of rare diseases have a genetic component, family members often know more about available treatments than healthcare professionals (HCPs), who may have limited experience with the disease and scant information on how best to treat it.
Having a portable service model that wraps around the therapy regardless of a patient’s geography or their insurer, empowers caregivers to manage patient outcomes with care protocols and technologies tailored to the unique requirements of a specific disease and patient community.
Fragmented hub and delivery operations also create a challenge for continuous improvement. Gathering insightful data from disparate service providers in order to analyze and act upon patient feedback and make program enhancements can be nearly impossible.
According to Marie Lamont, president of Patient Services, DLSS, if our industry continues to focus on selling as much product or service as possible, we’ve all failed. That’s why Dohmen is challenging the status quo and delivering a holistic patient-care model that encourages a more direct and transparent relationship between life science companies and the patients they serve. Our direct model brings clear benefits and efficiencies to the patient in speed, comprehensive care and standardized protocols.
To illustrate her point, an orphan drug company facing the challenge of controlling logistics, clinical care, and patient experience across disparate pharmacies participated in a direct-to-patient model. The company knew that without access to education and nutritional coaching, very few of its patients would continue on therapy past 90 days.
The company quickly activated a comprehensive, closed-network program, eliminating the need for multiple handoffs between disconnected intermediaries. A team of DLSS patient service coordinators, clinicians, and pharmacists worked with the manufacturer, healthcare providers, and the patients themselves to identify the special requirements of their condition and to map the ideal patient journey.
That insight informed a comprehensive, wrap-around service model focused on reducing the burden of the disease and increasing therapy adherence. Ms. Lamont says using Dohmen’s unique care coordinator model, every patient was given the benefit of a multifunctional care team with the ease and simplicity of a single point of contact. Patient service coordinators develop a personal relationship with every patient, providing high-touch support and educational outreach to improve adherence.
By consolidating patient support services into a one-stop-shop, the client gained access to the real-world experience of patients and their physicians, as well as centralized and meaningful patient data. The enhanced financial, operations and adherence reporting made information consistent, accessible and actionable, on an ongoing basis.
The program delivered the company’s best 30-day results in program history, including
First shipment reduced from 30+ days to less than seven
50% decrease in pending patients
8% increase in patient compliance
By reducing cost and complexity, patient outcomes can be positively impacted through better adherence, customer loyalty and by providing patients with a one stop concierge for all of their services.
Empowered Patients
The consumerism of the healthcare industry has empowered patients who are calling for a paradigm shift that demands simplicity and value. Patient care models must deliver profit through the delivery of the best outcomes possible to patients. It’s a conversion from volume-based to value-based transactions, and from a sales-revenue to a service-revenue model. As consumerism drives change throughout the system, a more direct-to-patient model will create a more effective, efficient, and easy-to-use health experience that could help save healthcare from economic collapse while supporting a healthier society. (PV)
Dohmen Life Science Services, a member of the Dohmen family of companies, provides intelligent outsourcing to biopharma and medical device companies. With the broadest suite of services in the industry, DLSS has helped more than 600 companies connect more closely with their customers, grow their business and realize their vision. Whether it’s navigating regulatory requirements during development, commercializing products, managing daily operations or providing patient-centric care for the rare disease community, DLSS helps our clients advance with speed, scale and certainty.
For more information, visit dlss.com.
