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Massachusetts payment plan for Novartis’s $5 million gene therapy

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novartisThe logo of Swiss drugmaker Novartis is seen at its headquarters in Basel in 2013.REUTERS/Arnd Wiegmann

  • A one-time treatment for a devastating rare disease could be paid for with an installment plan as soon as this summer in Massachusetts. 
  • Novartis’s AveXis unit is involved in the discussions. Its gene therapy could cost up to $5 million per treatment. 
  • Organizers hope the plan will ensure patients can access a potentially life-changing treatment.
  • Business Insider is the first to report on the discussions and the interest from AveXis. 

In recent years, no treatments were even available for the rare, devastating disease known as spinal muscular atrophy.

Now, in a matter of months, an experimental one-time therapy designed to address the disease’s underlying genetic cause could treat the disorder. First though, someone has to pay for its potential multimillion-dollar pricetag. 

A new effort is underway in Massachusetts to figure out how to do that. The idea is to let health insurers pay for the treatment over several years. If it succeeds, organizers hope that it could prove to be a viable model for the entire US. 

Novartis’s AveXis unit, which makes the gene therapy, Zolgensma, and has suggested a price tag of up to $5 million could be appropriate, is in talks to participate. Business Insider is the first to report both the plan and interest from Novartis’s AveXis. 

Americans have long paid for big-ticket items like houses and cars in a similar manner. But the plan — if it is finalized — would mark one of the first such approaches for a medicine. And Novartis would only receive each of its payment if the treatment is effective.

Paying for drugs on an installment plan

Think of it as installment plan that’s then tied to how well the therapy works. This would be a car loan but you’ve still got to see if the car is going to work,” Mark Trusheim, strategic director of the MIT Center for Biomedical Innovation’s NEWDIGS program, told Business Insider.

NEWDIGS brings organizations together to discuss how the US health system will be able to pay for costly cures, and the Massachusetts initiative came out of that, Trusheim said.

That work has become increasingly important as more gene therapies are likely to become available in coming years for different diseases, according to experts interviewed for this story. Gene therapies are typically administered in a single treatment and can have very high price tags compared to other types of pharmaceuticals. That could impose massive costs and challenges for an unprepared health system

Read more: From the gene therapy that spurred a $9 billion acquisition to a CBD medication for rare types of childhood epilepsy, here are the 12 promising drugs to watch in 2019

Doing the unthinkable, at an exceptional price

Gene therapy is a cutting-edge technology with the potential to cure diseases by tinkering with the body’s genetic material. Drugmakers have cited the value these new products could bring to patients and the medical system to justify their high prices.

Spinal muscular atrophy is a rare genetic condition that affects muscle movement in children and is the leading genetic cause of mortality in infants.

About 10,000 to 25,000 individuals in the U.S. are thought to have SMA, according to the SMA Foundation. But far fewer individuals would likely be treated with Zolgensma, since it’s thought that only newborns would be eligible.

In Massachusetts, only one or two dozen patients are expected each year at most, according to Trusheim. A US approval decision Zolgensma, is expected in May, and Novartis isn’t likely to release a precise price tag until then.

An independent group that evaluates drug prices has said the treatment could merit a price of $1.6 million to $5 million, Novartis Pharmaceuticals CEO Paul Hudson told Business Insider this week, noting that the cost of ventilators and another expensive therapy for the rare disease over a five-year period were, in total, comparable.

AveXis plans to explore `creative’ ways to get paid for its new treatment

Hudson heads up the business that oversees AveXis’s SMA gene therapy. AveXis would not comment specifically about its participation in the Massachusetts program, but said in a statement that gene therapies require new approaches in the US health system.

“Our objective is to ensure patients get access to this therapy, so we can make a meaningful difference in their lives,” the AveXis statement said. “We are working closely with payers to ensure we establish appropriate prices reflecting the value of gene therapy and explore creative options for payers, including installment payment options, as well as outcomes-based arrangements.”

As the Massachusetts pilot currently stands, the price of Zolgensma would be paid by health insurers in five annual installments, spread out over four years. It is similar to a plan unveiled by biotech Bluebird Bio earlier this week, MIT’s Trusheim said. 

Read more: A biotech is proposing a plan to pay for its pricey rare-disease treatment the same way you’d buy a TV or dishwasher

The program is starting with the Novartis product, but intends to add other gene therapies over time. Many but not all health insurers in Massachusetts are involved in the discussions, Trusheim said, and others could eventually join. Its organizers hope to launch it by this summer, and they believe they have addressed many of the challenges of this type of approach. 

‘We shouldn’t let cost get in the way’

One crucial challenge for these types of installment plans is what happens when patients switch health insurers. In this case, the insurers that intend to participate in the Massachusetts pilot have agreed to pick up the remaining payments left on the installment plan.

“If you believe these are likely to be life-changing to the people who need them, then we shouldn’t let cost get in the way,” Dr. Michael Sherman, chief medical officer of the nonprofit health insurer Harvard Pilgrim, told Business Insider. If the program gets off the ground, Harvard Pilgrim intends to be a part of it, he said. 

The planners are still working out other details. For instance, even though the payment structure and performance metrics for the gene therapy would be the same across insurers, each individual health plan would negotiate its own price for Zolgensma.

Insurers will also have to work out with Novartis what happens if a patient moves to another state. That might include continuing to make the payments or potentially making a one-time exit payment.

Another challenge is a legal requirement that the government Medicaid program get the “best price” on a drug. That could complicate this type of installment plan, since a failed treatment in which only one installment is paid could be interpreted as violating that “best price” guarantee. 

Read more: Bill Gates warns that nobody is paying attention to gene editing, a new technology that could make inequality even worse

Because spinal muscular atrophy is so rare, health insurers haven’t expressed concerns about Zolgensma’s price tag specifically, Hudson told Business Insider this week. Instead, they’d like the flexibility to pay in installments if needed, according to Hudson. 

“What they’re not saying is, ‘We’re worried about the price.’ What they are saying is, ‘We may have concerns about staging payments,'” Hudson said. 

Additional reporting by Lydia Ramsey

Read more about pharmaceutical innovation: 

The CEO of $230 billion pharma giant Novartis explains why he’s not scared of buying biotechs at an earlier — and riskier — stage

Big drugmakers are sitting on billions of cash — and top pharma executives are hinting about big M&A to come in 2019

One of the biggest drugmakers in the world thinks it has 26 billion-dollar drugs in the pipeline — here’s what they aim to treat

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Trudeau Government Should Turn to Sustainable Floor Heating In Its New Deal

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A consortium has been chosen by Public Services and Procurement Canada (PSPC) to manage the $1.1-billion overhaul of five heating and cooling plants in the National Capital Region. However, this decision has been met with a lot of disapproval by the country’s largest federal public service union.

Early June, the department announced that Innovate Energy has been awarded the 30-year contract “to design, retrofit, maintain and operate the plants,”winning the bid over a rival group that included SNC-Lavalin.

Minister of Environment, Catherine McKenna, said the federal government was “leading by example” in its bid to drastically reduce the amount of greenhouse gas emissions across the country. McKenna noted that by supporting this project, they’re utilizing heating and cooling infrastructure to promote a more environmentally friendly option.

“We’re very proud that our government is working with partners like Innovate Energy to modernize this critical infrastructure,” she said during the announcement at one of the facilities that will be upgraded, the Cliff Heating and Cooling Plant in downtown Ottawa.

The plants would be known as the district energy system and would heat 80 buildings in the area with steam. It is also expected to cool 67 of these buildings with chilled water through more than 14 kilometres of underground pipes.

Under the Energy Services Acquisition Program, PSPC will be tasked with modernizing the outdated technology in the plants to lower emissions and supportgrowth in the eco-friendly technology sector.

During the first stage of the overhaul, the system would be converted from steam to low temperature hot water and then switched from steam to electric chillers—with the estimated completion date being 2025. PSPC notes that the project will reduce current emissions by 63 per cent, the equivalent of removing 14,000 non-eco-friendly cars off the road.

Afterwards, the natural gas powering the plant will then be replaced by carbon-neutral fuel sources, which according to estimated will reduce emissions by a further 28 per cent. The renovation project is bound to save the government an estimated fee of more than $750 million in heating and cooling costs in the next 40 years.

Furthermore, the implementation of radiant floor heating in Ottawa by the federal government would be an additional step in driving its agenda for a more eco-friendly state.

According to the U.S. Department of Energy’s Energy Savers website, radiant floor heating has a lot of benefits and advantages over alternate heat systems and can cut heating costs by 25 to 50 per cent.

“It is more efficient than baseboard heating and usually more efficient than forced-air heating because no energy is lost through ducts,” the website states.

Radiant floor heating provides an equal amount of heat throughout a building, including areas that are difficult to heat, such as rooms with vaulted ceilings, garages or bathrooms. Consideringit warms people and objects directly—controlling the direct heat loss of the occupant—radiant floor heating provides comfort at lower thermostat settings.

“Radiators and other forms of ‘point’ heating circulate heat inefficiently and hence need to run for longer periods to obtain comfort levels,” reports the Residential Energy Services Network (RESNet).

Radiant heating is a clean and healthy option—a perfect choice for those with severe allergies—as it doesn’t rely on circulating air, meaning there are no potentially irritating particles blowing around the room. Additionally, it is more energy efficient, aesthetically pleasing with wall radiators or floor registers and virtually noiseless when in operation.

“They draw cold air across the floor and send warm air up to the ceiling, where it then falls, heating the room from the top down, creating drafts and circulating dust and allergens.”

It is important for the leadership in Ottawa to equally drive the adoption of radiant floor heating as doing this would lead to increased usage in residential buildings—and even government-owned buildings.

However, in October, the Public Service Alliance of Canada (PSAC), a representative body of employees of the plants,began a campaign target at the government against their decision to use a public-private partnership (P3) for the retrofitting project, citing concerns about costs and safety.

According to the union, outside employees won’t be bound to the same health and safety standards of government workers and that typically P3 projects cost a lot more than traditional public financing deals.

The union demands that the government scraps the proposed project and meet PSAC members and experts to brainstorm on a new way forward that would ensure federal employees continue to operate and maintain the plants.

However, parliamentary secretary to public services and procurement minister, Steve MacKinnon said that the union officials have consulted him but that after conducting an analysis, the P3 option was still the best for the job.

“We didn’t have (to) sacrifice on safety or health — we didn’t have to sacrifice on job security,” he said.

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Steps to becoming a Data Scientist

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Data science has become one of the most in-demand career paths in this century, according to Business Insider. With the amount of information being circulated online, it has created a huge demand for storing, interpreting and implementing big data for different purposes—hence the need for a data scientist.

Today, there too much information flying around for regular people to process efficiently and use. Therefore, it has become the responsibility of data scientists to collect, organize and analyze this data. Doing this helps various people, organizations, enterprise businesses and governments to manage, store and interpret this data for different purposes.

Though data scientists come from different educational backgrounds, a majority of them need to have a technical educational background. To pursue a career in data science, computer-related majors, graduations and post graduations in maths and statistics are quite useful.

Therefore, the steps to becoming a data scientist are quite straightforward.  After obtaining a bachelor’s degree in an IT related field—such as computer science, maths or physics—you can also further your education by obtaining a master’s degree in a data science or any other related field of study. With the necessary educational background, you can now search for a job and obtain the required experience in whichever filed you choose to invest your acquired skills.

Here are the necessary steps to be taken to become a data scientist.

Step 1: Obtain the necessary educational requirements

As earlier noted, different educational paths can still lead to a career in data science. However, it is impossible to begin a career in data science without obtaining a collegiate degree—as a four-year bachelor’s degree is really important. However, according to a report by Business Insider, over 73% of data scientist in existence today have a graduate degree and about 38% of them hold a Ph.D. Therefore, to rise above the crowd and get a high-end position in the field of data science, it is important to have a Master’s degree or a Ph.D.—and with various online data science masters program, obtaining one is quite easy.

Some institutions provide data science programs with courses that will equip students to analyze complex sets of data. These courses also involve a host of technical information about computers, statistics, data analysis techniques and many more. Completing these programs equips you with the necessary skills to function adequately as a data scientist.

Additionally, there are some technical—and computer-based degrees—that can aid you begin a career in data science. Some of them include studies in, Computer Science, Statistics, Social Science, Physics, Economics, Mathematics and Applied Math. These degrees will imbibe some important skills related to data science in you—namely, coding, experimenting, managing large amounts of data, solving quantitative problems and many others.

Step 2: Choose an area of specialization

There rarely exists an organization, agency or business today that doesn’t require the expertise of a data scientist. Hence, it is important that after acquiring the necessary education to start a career as a data scientist, you need to choose an area of specialization in the field you wish to work in.

Some of the specializations that exist in data science today include automotive, marketing, business, defence, sales, negotiation, insurance and many others.

Step 3: Kick start your career as a data scientist

After acquiring the necessary skills to become a data scientist, it is important to get a job in the filed and company of your choice where you can acquire some experience.

Many organizations offer valuable training to their data scientists and these pieces of training are typically centred around the specific internal systems and programs of an organization. Partaking in this training allows you learn some high-level analytical skills that were not taught during your various school programs—especially since data science is a constantly evolving field.

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Artificial intelligence pioneers win tech’s ‘Nobel Prize’

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Computers have become so smart during the past 20 years that people don’t think twice about chatting with digital assistants like Alexa and Siri or seeing their friends automatically tagged in Facebook pictures.

But making those quantum leaps from science fiction to reality required hard work from computer scientists like Yoshua Bengio, Geoffrey Hinton and Yann LeCun. The trio tapped into their own brainpower to make it possible for machines to learn like humans, a breakthrough now commonly known as “artificial intelligence,” or AI.

Their insights and persistence were rewarded Wednesday with the Turing Award, an honor that has become known as technology industry’s version of the Nobel Prize. It comes with a $1 million prize funded by Google, a company where AI has become part of its DNA.

The award marks the latest recognition of the instrumental role that artificial intelligence will likely play in redefining the relationship between humanity and technology in the decades ahead.

Artificial intelligence is now one of the fastest-growing areas in all of science and one of the most talked-about topics in society,” said Cherri Pancake, president of the Association for Computing Machinery, the group behind the Turing Award.

Although they have known each other for than 30 years, Bengio, Hinton and LeCun have mostly worked separately on technology known as neural networks. These are the electronic engines that power tasks such as facial and speech recognition, areas where computers have made enormous strides over the past decade. Such neural networks also are a critical component of robotic systems that are automating a wide range of other human activity, including driving.

Their belief in the power of neural networks was once mocked by their peers, Hinton said. No more. He now works at Google as a vice president and senior fellow while LeCun is chief AI scientist at Facebook. Bengio remains immersed in academia as a University of Montreal professor in addition to serving as scientific director at the Artificial Intelligence Institute in Quebec.

“For a long time, people thought what the three of us were doing was nonsense,” Hinton said in an interview with The Associated Press. “They thought we were very misguided and what we were doing was a very surprising thing for apparently intelligent people to waste their time on. My message to young researchers is, don’t be put off if everyone tells you what are doing is silly.” Now, some people are worried that the results of the researchers’ efforts might spiral out of control.

While the AI revolution is raising hopes that computers will make most people’s lives more convenient and enjoyable, it’s also stoking fears that humanity eventually will be living at the mercy of machines.

Bengio, Hinton and LeCun share some of those concerns especially the doomsday scenarios that envision AI technology developed into weapons systems that wipe out humanity.

But they are far more optimistic about the other prospects of AI empowering computers to deliver more accurate warnings about floods and earthquakes, for instance, or detecting health risks, such as cancer and heart attacks, far earlier than human doctors.

“One thing is very clear, the techniques that we developed can be used for an enormous amount of good affecting hundreds of millions of people,” Hinton said.

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