What we’ll do

We will manufacture and distribute safe, FDA approved orphan drugs that have been discontinued for financial reasons to patients who need it.

Orphan drugs treat diseases that affect 200k people or less in the US at any given time. There are large industry incentives for R&D, but not many for keeping them in the market. For many large pharmaceuticals even a multi-billion dollar market may not be large enough to justify serving, leaving patients without access to the medicine they need to lead a normal, happy life.

That’s where we come in. Through our digital platform doctors and patients can order, track and receive the medicine they need. We’re logistics experts and care deeply for patients who could be treated but have been left behind by the industry. We’re smaller than traditional pharma companies but we’re also nimble and can iterate quickly. Through our energy, focus on user experience, and innovation we aim to provide care for our patients for as long as they need it.

This is also close to our heart: Our CEO’s family has gone through this ordeal in the past.

When my mom was diagnosed and began treatment her quality of life improved dramatically but a couple years into the treatment her medication was discontinued

Where we’ll start

What we do know is that we want to build a sustainable business model around user centered tech that enables patients to lead healthy lives. We need to think in the long term because a lot of orphan diseases are chronic and require lifetime medication.

As a company outside of the value chain we´re not incentivized to discontinue products in favor of higher-margin, newer drugs. We want to serve these people.

We’re quite open to letting our findings lead the way. We’re still doing research to determine the best way to provide medication for our patients that works best for them, their doctors and our company in order to provide sustainable, long-term care.

When her medication was discontinued we were worried it had been pulled for safety reasons. Then we learned: not enough people have Sjögren syndrome so the lab was switching production to more profitable medications

Some crazy ideas

That said, we’ve thought of some more specific ways of solving the problem. Our craziest (and coolest) idea so far is to build a 3D printer for pills. The doctor could send the prescription directly to a pharmacy with this device (or the person’s home if legal) and the person would have a month’s worth of pills.

In the early days we drafted an early prototype around crowdfunding. People would pledge towards a batch of, for example, Sjögren syndrome medication, and if the goal was met then we produce it and deliver it. This would allow us to know our production size beforehand so we know we’ll sell entire batches. Since we’ll target chronic diseases we could continue production for these patients indefinitely.

Any of our crazy ideas so far is better than the current alternatives.

Her doctor found a brand of eye drops that contains the same ingredient, so my mom's symptoms remain under control. It's ridiculous to me that my mom has to drink eye drops to treat her condition instead of having her pills.

Our insights

While the market size might not meet current industry quotas we know there is a market desperate to be served. If we provide an excellent product and an excellent experience they can be our customers for the rest of their lives. We have the opportunity of capturing a market in need while improving the quality of life of millions of people.

Our research suggests that the orphan drug market is milked for their incentives and then tossed away. We want to catch it and maintain it in the long term. We don’t plan on doing R&D, just manufacturing and distribution of safe, FDA approved orphan drugs. We don’t want to abuse the structure of the healthcare system and charge outrageous prices for them if we can help it. We believe we’re in a position to generate a ton of goodwill and trust with these patients so they become lifetime customers of our company.

This is a market with terrible alternatives, desperate to be served. For them this is not a want, it’s a need.

We were shocked to learn that production wasn’t stopped for safety reasons or health related risks, it was a financially motivated decision.

Our inspiration

We see a gap in a market with very high demand (need, not want), with potential lifetime customers. As a startup, we are free from the expectations of the pharma industry in terms of revenue and sales quotas, and are in an excellent position to capture a niche market. Where servicing this niche market might seem as a waste of resources for a large company, it is of sufficient size that a startup could service it in a sustainable and profitable way.

The Orphan Drug Act of 1983 and similar regulations worldwide generate incentives for the development of orphan drugs, such as tax breaks and extended periods of market exclusivity. Once these benefits expire, big companies have few reasons to keep them in the market, so they stop producing them in order to free up manufacturing and distribution capacities for higher-margin, higher-demand drugs. Patients who rely on orphan drugs to lead a normal, happy life are left hanging and have to resort to alternative (sometimes extreme) measures to treat their conditions.

We’ve seen some creative examples of matching supply and demand in the healthcare market. Al Roth, the Nobel laureate and Stanford professor of economics built a Kidney Exchange back in 2003 where people in need of kidney transplant could be matched to kidney donors. In the same way we want to match patients with the medication they need and help them improve their quality of life.

Perfectly safe and useful medication stops being produced each year because there are not enough financial incentives for big pharma to keep producing them. Many of these are intended to treat chronic diseases and people are left adrift with no alternatives.

We all worry sick that the eye drops will get discontinued or the company who imports the drops will stop carrying them and the nightmare will begin all over again.

What we need

We need to figure out if Healthpack can get started without a round of significant investment. Producing or importing medication is a capital intensive business and we want to figure out if scale is necessary to help even one patient. Scale might also be important because patients suffering orphan diseases are scattered across large geographies.

We also need to answer several questions, so we’ll do research and quick prototyping to refine all the hows:

I would like to help people with similar experiences to feel safe and have peace of mind, knowing that their medication will always be available for them

It’s close to our heart

Our CEO’s family has gone through this ordeal in the past and he would like to take this opportunity to talk about it.

My mom has Sjögren syndrome. It’s a really ugly disease that targets mucous glands in the body (eyes, mouth, organs and tissues) and dries them out. It has really ugly symptoms and heavily impacts a person’s wellbeing and quality of life. It’s a chronic disease so it requires lifetime medication.

She went undiagnosed for many painful years, it occurs in 0.1 to 4 percent of the population and although not rare it is not a common disease. When she was finally diagnosed and began treatment her quality of life improved dramatically, and by extension the quality of life of the whole family improved, but a couple years into the treatment her medication was discontinued. We checked with her doctor, the distributor and the lab, worried that the medicine had been pulled for safety reasons, and we learned that production was being stopped for financial reasons, not enough people have Sjögren syndrome so they were switching production to more profitable medications. We were shocked to learn that production wasn’t stopped for safety reasons or health related risks, it was a financially motivated decision.

Looking into alternative treatments, her doctor found a brand of eye drops that contains the same active ingredient, so my mom’s symptoms remain under control. It’s ridiculous to me that my mom has to drink eye drops to treat her condition instead of having her pills. We all worry sick that the eye drops will get discontinued or the company who imports the drops stops carrying them and the nightmare will begin all over again.

I’ve come across other instances of this phenomenon and I have experienced the fear and helplessness that comes from knowing what ails you but not being able to access the solution. I would like to help people with similar experiences to feel safe and have peace of mind, knowing that their medication will always be available for them.

– Mario Rodríguez

Contact

Want to help us bring Healthpack into the world? Drop us a line, we'll be glad to write back.