Global Blood Therapeutics and Novartis find themselves facing off against one another in the suddenly hot sickle-cell disease area. But in the years leading up to the recent approvals of their treatments, the rivals tread similar paths while dispelling entrenched myths and misperceptions among the patient and doctor communities. And, largely because the disease has been neglected for so long, and the stigmas and isolation run so deep, that work looks set to continue, marketers say.

On Nov. 25, GBT scored FDA approval for Oxbryta (voxelotor), a once-daily pill which treats the root cause of sickle-cell disease — hemoglobin polymerization, which leads red blood cells to contort and stiffen into sickle shapes. It came 10 days after the agency green-lighted Adakveo (crizanlizumab), a once-monthly infusion from Novartis approved to reduce another of sickle cell’s hallmarks, the acute pain events known as vaso-occlusive crises. 

Following decades without any new options, the approvals effectively doubled the number of available therapies, a welcome advance for the 100,000 people in the U.S. who live with the rare disease, most of whom are of African descent. Both companies have engaged closely with the patient, advocacy and HCP communities for a number of years, including the Sickle Cell Disease Association of America (SCDAA) and other groups. 

Both firms implemented advocates’ suggestions to include the patient voice in their campaigns, and have sought to showcase the stories of disease sufferers online, including via social media. That said, nuances in their patient marketing playbooks have led to divergent results.

“We involved advocates to choose the campaign objectives, name and features,” said Novartis Oncology’s Frederike Podevin, executive director, US marketing, hematology. “We believe the most effective way to reach the SCD community is to co-pilot in the creation of content and resources that make a real difference in their lives.”

The company’s patient-focused Generation S campaign launched in 2018 with the goal of changing perceptions and misunderstandings. Patients have been encouraged to submit their personal sickle cell stories online and via “story booths” at patient events. These stories range from patients describing what it’s like to go through a vaso-occlusive crisis, the agony and debilitating effects of which can last for days; to the isolation these patients feel; to how they experience discrimination such as not being able to get a job. 

Novartis enlisted Jordin Sparks, the African-American actor and 2007 “American Idol” winner, to help boost awareness.

One 23-year-old girl who’s spent most of her life with the disease described seeing a 10-year-old boy in the throes of a sickle-cell pain crisis. The episode “saddened me so much to see that nothing really has changed. It reminded me how little sickle cell has come [in] society, and how us sickle-cell-ers continue to be forgotten in the realms of society. That’s what affects me the most.“ 

The Swiss drug maker also enlisted Jordin Sparks, the African-American actor and 2007 “American Idol” winner, to help boost awareness in areas where disease sufferers are likely to live, and established a series of educational events for the sickle-cell community called Rock the Block.

The platform has garnered 1,050 unique SCD stories within 12 months of launch, Podevin said, and media efforts have touched millions of patients, families and HCPs. Novartis worked with Havas, which served as AOR for all creative and PR. Media services are handled under a bespoke agency, N2, which is comprised of entities from across Publicis Groupe.

GBT launched the consumer campaign Sickle Cell Speaks this past July to break down stigmas associated with SCD, like that people with sickle cell are drug addicts, that the only effect is pain or that it’s contagious. The site features imagery of patients and caregivers telling their authentic stories via inspiring videos and quotes. 

“Encouraging more open discussion and increasing understanding of the condition is a foundational element,” said Laura Cruz, VP marketing at GBT. Within the first four months of promotion, GBT’s Sickle Cell Speaks Facebook channel has grown to more than 18,000 followers. 

On the HCP side, Novartis’ SCD team came out with Rethink SCD, which aims to challenge HCPs to think differently about SCD and offer deep scientific content to change entrenched beliefs. 

Sickle Cell Speaks, a campaign from Global Blood Therapeutics, aims to break down stigmas associated with sickle-cell disease.

GBT’s SCD Silent Damage effort, meanwhile, aimed to boost attention among physicians regarding the cascading effects of hemoglobin polymerization, which subsequently drives red blood cells to distort into sickle shapes, blocking blood vessels (vaso-occlusion) and breaking down (hemolysis) leading to anemia.

The effort emphasizes that, even if a patient appears asymptomatic, they may be experiencing progressive damage from the sickling and subsequent pathologies, explained Cruz. GBT’s AORs were Riester for Sickle Cell Speaks, Intouch Solutions for SCD Silent Damage and Publicis Health Media for omnichannel media strategy on both campaigns.

Investment bank Jefferies expects Adakveo to achieve sales of $1.8 billion by 2023, and a 2018 Evaluate forecast predicted 2022 peak sales of $529 million for Oxbryta. Both are expected to become available in coming weeks. What’s more, given the two drugs’ different mechanisms of action, some say they may actually be used in combination therapy. 

Oxbryta’s annual list price is around $125,000, with the net price coming in just under $100,000 per year. A weight-based treatment, Adakveo’s list price will fall between $84,852 and $113,136 per year. Annual costs for treating patients with sickle cell have been estimated to exceed $285,000 a year.

Now that the companies are set to begin communicating about their brands, and field sales teams to begin calling on doctors, should the disease-marketing goals still focus on changing those deeply held perceptions and misunderstandings?

“We need multiple efforts to raise awareness of sickle cell disease and shine the light on patient experiences in this country,” said SCDAA’s president, Beverley Francis-Gibson. 

That work is far from complete.

Podevin said Novartis Oncology’s patient and HCP disease campaigns will continue. “The need to reshape the SCD narrative through education and spreading awareness still exists. This will not change in the immediate future.”

Sickle cell disease, she added, “continues to be a condition that is misunderstood and far too often marginalized by the general public, the media and our healthcare system,” both in the US and around the world. 

There is a “tremendous disparity” in the care of SCD patients compared to other conditions, Podevin added, despite being one of the most common genetic disorders and having been characterized more than 100 years ago. “People living with SCD frequently live their lives in the shadows—their voices going unheard, their severe pain going inadequately managed or ignored—and the disease remains unknown for many among the general public.”

GBT’s own market research had revealed that “the impact of stigmas, isolation and overall lack of open discussion about the disease were profound,” said Cruz.

Working to uproot these misperceptions and to help this disease community, which society has largely forgotten, to finally feel heard will likely see these two rival companies continue traveling similar marketing routes.

This article was updated to clarify that media responsibilities for Novartis are handled by the bespoke agency N2, and not by PHM, as had been stated previously.