Tag Archives: Health Care

How Do Make Specialized Healthcare Accessible and Affordable?

Frederick G. Banting and Charles Best who discovered Insulin

New Orleans    In this brave new world of medicine involving stem cells and gene therapy, all of which were almost unimaginable in the past, we still are hitting our heads against the wall at the inability to craft a solution to the old problem in the United States of equal access and affordability.  Doctors are estimating the price tags on some of these treatments could hit up to $1 million in our current system.  Lacking universal health care in the United States that spells death and disaster for many families in the 99%.

When the FDA approves a treatment, especially if it is the only one likely to be effective, similar to the sickle-cell disease effecting so many in lower income, minority neighborhoods, government and private health care insurers face an moral obligation to provide the coverage and pay the bill.  We’ve been seeing too many stories of pharmaceutical companies jacking up the bill for rare medicines with limited manufacturing capabilities and forcing insurers to pay or families to do without.  Insurers, drug companies, and even government health officials since the Affordable Care Act fights have danced around so-called “death panels” or anything that might seem to impose price ceilings or the rationing of care, leaving us sucking air for a solution.

Michael Sherman, the chief medical officer of Harvard Pilgrim Health Care in Massachusetts, has made the case in Scientific American that under the existing regime something that might work would be a value-based agreement between institutions, drug companies, and insurers for new drugs.  The essence of the agreement is that if it works, they get paid their demand price, and if it doesn’t work, they are paid a substantially lowered price.  Sherman wonders if such agreements might work for gene therapies as well.

It seems a stretch.  Yes, making the companies prove their mettle is appealing, but it doesn’t deal with the issue that companies are setting exorbitant prices for any and all drugs in the first place in the US, the likes of which we see nowhere else in the world.  For example, the inventors of insulin donated the patent, rather than enriching themselves, but drug makers now charge $200 to $300 a vial for this lifesaver, many decades after its discovery.  It is hard to imagine gene therapies that depend on doctors, drug companies, hospitals, and insurers at this point would be able to come to a reasonable agreement that would make such treatment affordable to all.  I would have more hope for Congress!

Like it or not, it is hard to avoid the root question even as many speculate on how far they can climb out on the branches before falling:  we need universal health care protection for all Americans!  Without it, specialized drugs and path-breaking gene treatments, will make hospitals the new playgrounds of the rich, while the rest of us suffer and die.


Sickle-cell, Gene Fixes, and Health Justice

New Orleans       Gene therapy is both the wave of the future and a huge ethical quandary of almost unimaginable complexity.  A young Chinese doctor, who attracted international publicity by becoming the first to perform gene therapy in the womb on a set of twins to potentially provide immunity to a disease to which they were genetically susceptible, is now facing sanctions and legal problems as the Chinese government reacts to protests from virtually all quarters.  There are debates that surround all of these issues.  Will the rich be allowed to pay to have “perfect” babies?  Will genetic tests be allowed for all and therapies provided for genetic diseases from in utero forward?  The questions are thorny and endless at this point, especially since so few outside of the medical field have a firm grasp of the potential and the current state of play.

It was exciting to read an article in Scientific American that focused on the devastating sickle-cell disease and quoted researchers and doctors arguing that, “Gene therapy might offer a cure for sickle-cell disease, and clinical trials are already underway.”  Wow!  Anyone who has worked in lower income communities heavily populated by minorities, both in the US and globally, knows people well who have suffered – and died – from this disease.  No one is immune.  I first learned of this disease at twenty years old from an early president of Massachusetts Welfare Rights Organization’s son who was afflicted.   Later, I was close at hand when the grandchild of the president of our union local in Louisiana, and the daughter of one of ACORN organizers and leaders in New Orleans, were afflicted and endured constant crises.  One was fortunate enough to have a bone marrow transplant, which is about the only current cure, but gene therapy could help many more victims of the disease since it would rely on stem-cells from the individual rather than a donor.  Because the therapy involves only essentially one gene, a cure is fully realizable, everything being equal.

Unfortunately, nothing is equal, leading one doctor to be quoted saying “sickle-cell disease represents the best and worst of health care in the United States.”  The disease itself is ghettoized, making demographics destiny in a deadly way.  One expert “estimates that at least 30% of his adult patients with sickle-cell disease die from preventable causes…but the lack of infrastructure, such as care centers” leaves gaps in monitoring and treatment with fatal consequences.  The hope of gene therapy for sickle-cell is then deflated by concerns that the infrastructure that doesn’t exist now, would also not exist in the future to achieve the cure.

And, then there’s the cost.  Experts estimate that gene therapy would run from $500,000 to $700,000 over a couple of years.  It would save money over time, but obviously the costs would come on the frontend in achieving the cure.  It is also a huge public policy problem because 50% of the patients in the US being treated for sickle-cell are covered by Medicare or Medicaid.  As one doctor says, the problem is “money and ethnicity.”

The Center for Disease Control estimates that 100,000 Americans suffer from sickle-cell.  In urban communities where many of us work, we know the pain is permanent, and then there is death.  Increasingly, we are also going to know that there is a pathway to a cure here that could upend a tragic inheritance now and in the future.

There needs to be equity and justice in healthcare,  just as we demand it everywhere else.