New Patient Services Program Helps People Navigate Their Road To A Cure
Now that LUXTURNA™ has come to market as a revolutionary vision-restoring genetic treatment, how does it get to patients?
The answer to that question and many others can be found within a new patient services program developed by LUXTURNA™ creator Spark Therapeutics. The newly approved injectable drug treats people with the RPE65 gene mutation that causes Leber congenital amaurosis (LCA) and retinitis pigmentosa (RP), both of which are inherited retinal diseases (IRDs).
The program is called Spark Therapeutics Generation Patient Services and it is being used by RPE65 patients who underwent surgery with LUXTURNA™ and those who are preparing for treatment. Spark launched the breakthrough drug commercially in March, three months after it received approval from the U.S. Food and Drug Administration.
Spark Therapeutics Generation Patient Services provides each patient with a two-person team to help
navigate insurance coverage and connect them to financial assistance resources as they are needed, said Patient Services Lead Sarah Derewitz.
“We partner with them to help set their expectations along the way because it’s a long and potentially confusing journey,” she said.
Patient Services is dedicated to communicating with patients in the best way for everyone, which means via Language Line interpreters if their primary language is not English, via mail if they don’t use a computer, in person, by text, by email or by telephone.
“Whatever works,” she said.
Sarah St. Pierre Pettit, whose 9-year-old son Creed underwent surgery on both eyes with LUXTURNA™ last month, said she has talked with and emailed questions to the Patient Services people at Spark since January.
Sarah, from Mount Dora, Fla., said her Spark team answered a full range of questions, including those that stemmed from her simply being a nervous mom, worried about her son. No matter what the topic, Sarah noted, Spark always responded quickly.
Amy Reif, whose 7-year-old Hannah is on track for LUXTURNA™ treatment this summer, also started talking with Spark in January. Amy, from Maple Glen, Penn., said Spark hooked her up with a team to help with insurance coverage, available financial assistance and treatment centers.
Derewitz characterized the Patient Services team as “logistical, supportive, proactive and expectation-setting.”
Patient Services is committed to answering any non-medical questions that come their way. She said patients with medical questions are referred to their doctors for answers.
One member of the team is a Patient Access Specialist, the patient’s first point of contact who works in Spark Therapeutic offices and stays in touch by phone or by email.
The other team member is a Patient Access Liaison, and as liaison Lee Liberator said of the title’s acronym, PAL, “We try to be a resource.”
“Our driving interest and desire is to have patients reach out to us when they have questions,” she said. “And because of how rare this disease is, we just want to make sure they have access to the tools and information available.”
Liberator is inspired by patients’ life stories and works to alleviate any stress or confusion patients might encounter. She works as a source of in-person support when you need it.
You’ll find more information about her and other liaisons and specialists on the Spark Therapeutics Generation Patient Services website www.mysparkgeneration.com.
As the website says, the goal of Spark’s Patient Services is to be your partner and to help you through your experience. It is voluntary and participating or not taking part in the program does not affect your eligibility for treatment or the nature of your treatment or care.
Genetic diagnosis required
While enrolling in the program is not required to receive LUXTURNA™ treatment, Spark encourages patients to take advantage of the free service.
What is required for program enrollment is a confirmed genetic diagnosis of a mutation in both copies of the RPE65 gene. Humans have two copies of every gene, one from each parent, so each person has two copies of the RPE65 gene.
To learn more about getting genetically tested, go to www.luxturna.com/take-the-first-step.
If you already have been genetically diagnosed, fill out an enrollment form available on the www.mysparkgeneration.com website. This allows Spark to enroll you in the program, investigate insurance and schedule a treatment center consultation.
If you already are connected with a treatment center, you will need to have a treatment center specialist fill out a Statement of Medical Necessity (SMN) for you. An SMN confirms eligibility to receive treatment and begins the investigation into insurance benefits.
If you are not connected with a treatment center, this is where your team comes into play to discuss options and insurance requirements to schedule a consultation at treatment center to confirm your eligibility. If eligible, the center specialist will fill out an SMN confirming eligibility and start looking into insurance benefits.
People interested in Spark’s patient services program also can call toll free 1-833-SPARK-PS (1-833-772-7577) between 8:30 a.m.-6:30 p.m. ET, Monday through Friday. Services are confidential and free.
You also can send an email to: firstname.lastname@example.org