VIDEOS: High-priced drugs, out-of-pocket costs raise challenges for neurologists

 

LOS ANGELES – Neurologists can play an important role in helping patients gain access to high-cost, breakthrough drugs, while at the same time guiding patients to lower-cost options whenever possible, speakers said at the annual meeting of the American Academy of Neurology.

The use of the Orphan Drug approval pathway established in 1983 has gained a great deal of steam for rare neurologic diseases in recent years with the approval of a number of drugs, such as nusinersen (Spinraza) for spinal muscular atrophy, eteplirsen (Exondys 51) for Duchenne muscular dystrophy, and edaravone (Radicava) for amyotrophic lateral sclerosis, said Nicholas Johnson, MD, a pediatric neuromuscular disease specialist at the University of Utah, Salt Lake City.

But given that only 2% of U.S. physicians are neurologists, yet 18% of rare diseases are neurologic and 11% of drugs in development overall are for neurologic diseases, there are a great deal of challenges arising for neurologists in getting access to these new high-priced drugs for their patients, said Dr. Johnson, who leads the AAN’s Neurology Drug Pricing Task Force and is also chair of the AAN Government Relations Committee.

These challenges range from increased administrative burden on staff, getting insurance approval, finding administration sites, and the ability to perform special patient assessments, he said in an interview.

Dr. Nicholas Johnson’s interview:
 

Dr. Brian Callaghan’s interview:
 

Many high-priced drugs commonly prescribed for chronic neurologic conditions and diagnostic tests also have high out-of-pocket costs for patients, but it is remarkably hard even for well-informed experts to find the actual costs that patients will pay out of pocket for such drugs and tests, according to Brian Callaghan, MD, a neuromuscular disease specialist at the University of Michigan, Ann Arbor.

 

Neurologist can seek to find more affordable alternatives to drugs when the out-of-pocket expenses are too great, said Dr. Callaghan, who also serves on the Neurology Drug Pricing Task Force. It may be advisable to put certain drugs lower on a list of potential treatment options than others for a chronic condition such as epilepsy because of their out-of-pocket costs, but it can be frustratingly hard to determine these costs in advance.

The University of Michigan Health System is unique in having drug cost data provided as part of information presented to physicians in electronic health records, but this is not the case in most other clinics. Until doctors can regularly access patient-specific drug and diagnostic testing out-of-pocket costs through EHRs, finding the best affordable medications for patients will remain a costly and time-consuming process, he said in an interview.
 

jevans@mdedge.com

 

LOS ANGELES – Neurologists can play an important role in helping patients gain access to high-cost, breakthrough drugs, while at the same time guiding patients to lower-cost options whenever possible, speakers said at the annual meeting of the American Academy of Neurology.

The use of the Orphan Drug approval pathway established in 1983 has gained a great deal of steam for rare neurologic diseases in recent years with the approval of a number of drugs, such as nusinersen (Spinraza) for spinal muscular atrophy, eteplirsen (Exondys 51) for Duchenne muscular dystrophy, and edaravone (Radicava) for amyotrophic lateral sclerosis, said Nicholas Johnson, MD, a pediatric neuromuscular disease specialist at the University of Utah, Salt Lake City.

But given that only 2% of U.S. physicians are neurologists, yet 18% of rare diseases are neurologic and 11% of drugs in development overall are for neurologic diseases, there are a great deal of challenges arising for neurologists in getting access to these new high-priced drugs for their patients, said Dr. Johnson, who leads the AAN’s Neurology Drug Pricing Task Force and is also chair of the AAN Government Relations Committee.

These challenges range from increased administrative burden on staff, getting insurance approval, finding administration sites, and the ability to perform special patient assessments, he said in an interview.

Dr. Nicholas Johnson’s interview:
 

Dr. Brian Callaghan’s interview:
 

Many high-priced drugs commonly prescribed for chronic neurologic conditions and diagnostic tests also have high out-of-pocket costs for patients, but it is remarkably hard even for well-informed experts to find the actual costs that patients will pay out of pocket for such drugs and tests, according to Brian Callaghan, MD, a neuromuscular disease specialist at the University of Michigan, Ann Arbor.

 

Neurologist can seek to find more affordable alternatives to drugs when the out-of-pocket expenses are too great, said Dr. Callaghan, who also serves on the Neurology Drug Pricing Task Force. It may be advisable to put certain drugs lower on a list of potential treatment options than others for a chronic condition such as epilepsy because of their out-of-pocket costs, but it can be frustratingly hard to determine these costs in advance.

The University of Michigan Health System is unique in having drug cost data provided as part of information presented to physicians in electronic health records, but this is not the case in most other clinics. Until doctors can regularly access patient-specific drug and diagnostic testing out-of-pocket costs through EHRs, finding the best affordable medications for patients will remain a costly and time-consuming process, he said in an interview.
 

jevans@mdedge.com

 

LOS ANGELES – Neurologists can play an important role in helping patients gain access to high-cost, breakthrough drugs, while at the same time guiding patients to lower-cost options whenever possible, speakers said at the annual meeting of the American Academy of Neurology.

The use of the Orphan Drug approval pathway established in 1983 has gained a great deal of steam for rare neurologic diseases in recent years with the approval of a number of drugs, such as nusinersen (Spinraza) for spinal muscular atrophy, eteplirsen (Exondys 51) for Duchenne muscular dystrophy, and edaravone (Radicava) for amyotrophic lateral sclerosis, said Nicholas Johnson, MD, a pediatric neuromuscular disease specialist at the University of Utah, Salt Lake City.

But given that only 2% of U.S. physicians are neurologists, yet 18% of rare diseases are neurologic and 11% of drugs in development overall are for neurologic diseases, there are a great deal of challenges arising for neurologists in getting access to these new high-priced drugs for their patients, said Dr. Johnson, who leads the AAN’s Neurology Drug Pricing Task Force and is also chair of the AAN Government Relations Committee.

These challenges range from increased administrative burden on staff, getting insurance approval, finding administration sites, and the ability to perform special patient assessments, he said in an interview.

Dr. Nicholas Johnson’s interview:
 

Dr. Brian Callaghan’s interview:
 

Many high-priced drugs commonly prescribed for chronic neurologic conditions and diagnostic tests also have high out-of-pocket costs for patients, but it is remarkably hard even for well-informed experts to find the actual costs that patients will pay out of pocket for such drugs and tests, according to Brian Callaghan, MD, a neuromuscular disease specialist at the University of Michigan, Ann Arbor.

 

Neurologist can seek to find more affordable alternatives to drugs when the out-of-pocket expenses are too great, said Dr. Callaghan, who also serves on the Neurology Drug Pricing Task Force. It may be advisable to put certain drugs lower on a list of potential treatment options than others for a chronic condition such as epilepsy because of their out-of-pocket costs, but it can be frustratingly hard to determine these costs in advance.

The University of Michigan Health System is unique in having drug cost data provided as part of information presented to physicians in electronic health records, but this is not the case in most other clinics. Until doctors can regularly access patient-specific drug and diagnostic testing out-of-pocket costs through EHRs, finding the best affordable medications for patients will remain a costly and time-consuming process, he said in an interview.
 

jevans@mdedge.com