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It is common for different healthcare sectors to work together to keep each other wealthy, as exemplified by the constant price fluctuations in the hemophilia treatment market. Hemophilia, a disorder in which victims’ blood does not clot properly, is incredibly rare.
In 1993, the gene for factor VIII, a natural clotting agent, was successfully sequenced for the first time using recombinant DNA technology. Factor VIII was previously extracted from blood plasma through procedures that were more difficult and higher risk, so patients initially rejoiced in this discovery. Wholesale treatments for the new products were initially priced at $1 per unit, which would amount to $4,000 per hemophilia episode. Thanks to the ease at which drug manufacturers could create factor VII, hemophiliacs finally had access to preventative treatments. The average patient taking three infusions per week would often pay $300,000-$600,000 for treatment over the course of a year.
A distinct hemophilia industry quickly grew as a result of patients’ increased access to care, and hemophilia businesses began chasing profits. They adopted a model where “home care compan[ies] allied with a particular manufacturer and got paid by the drugmaker per unit of factor VIII delivered into patients’ veins” (227). Since this is all covered by a drugmakers’ co-pay assistance plan, many hemophiliacs were not aware what they were paying. However, they switched gears in the late 2000s when patents for factor VIII were starting to expire. To prevent the encroachment of generic brands into the market, industry scientists attached factor VIII to a different molecule that was touted as lasting longer in the bloodstream. This meant patients could reduce the number of infusions without risking their health.
Under their current strategy, manufacturers could lose profits by continuing to serve their existing patients. While the production costs were cheap enough, most manufacturers were nervous about going through the FDA approval process and setting up trials. Leaders within the hemophilia community proposed an alternative: lowering the price of existing factor VIII drugs to encourage patients to stay within the existing market. Rosenthal calls this constant battle over factor VIII pricing a symptom of a larger problem: “we—and our employers and insurers—are shopping for healthcare in a market where everything is monetized to the maximum, without much regard for the implications for patient health” (229).
The Affordable Care Act (ACA, also known as Obamacare) was a landmark piece of legislation that expanded access to federal healthcare programs. It gave many Americans newfound access to lifesaving care with few barriers to entry. However, insurance providers have managed to exploit loopholes that exist within the law for their own personal gain.
Obamacare was meant to serve as a “first line of defense against the expenses of American medicine” (231) and incentivize healthcare providers to raise the standard of care for patients while cutting back on profits. A key provision of the ACA that has undoubtedly saved lives is one that bans insurers from denying treatment based on “pre-existing conditions.” Prior to the ACA, insurance companies broadened the definition of pre-existing conditions to include things as minute as taking an antidepressant. The ACA also caps an individual’s out-of-pocket spending at $6,850 for any in-network treatments, lists “essential health benefits” that all insurers must cover and forbade lifetime limits on insurance payments.
Obama had to make several concessions to ensure the ACA’s passage; he “cave[d] on anything that would directly limit the industry’s ability to profit” (231). While most of the programs had some noticeable good effects, the ACA was unable to meaningfully regulate the industry’s financial conduct.
Medicare Part D, which was approved by President George W. Bush, gave seniors the chance to opt into a supplemental program that offered them drug coverage through Medicare. The government included a specific Medicare provision for prescriptions to curb overpricing into the text of the supplement. It kicked in after seniors hit certain spending thresholds and was structured in a way that forced them to think twice about prescriptions they might not need. This was enforced via a provision where Medicare would not pay any costs exceeding $2,906, leaving that to the patient. Payments falling within this threshold are known as being “in the donut hole.”
The drug industry began developing workarounds for Medicare Part D. Since the program ensured that seniors were only paying a copay for their medication, drug companies raised prices so that they would be over Part D’s specific coverage limit. Some seniors now find themselves spending more on medication than they were prior to Part D’s passage.
The ACA is slowly developing a donut hole problem of its own. The framers of the ACA wrote mandates that patients would only have to cover 45% of costs of drugs in the donut hole. The donut hole would also have to be sealed by 2020. However, manufacturers have already proven themselves adept at navigating legal loopholes, which possibly foreshadows trouble for the ACA.
Politicians, doctors, and insurers have all played a role in undermining the ACA. Medical PACs had a vested interest in driving down support for the ACA, and they pressured Obama to drop a key provision called the public option. The public option “refers to the notion that there would be on offer a national health insurance plan or that the government would allow anyone to choose Medicare as his insurer” (234). Many politicians, not wanting to upset the healthcare industry, pressured Obama to remove the public option from the final bill. Insurance cooperatives were implemented in its place. They were hurriedly formed, meaning that there was usually only one per state. Their size and public opinion also precluded them from having any significant bargaining power with hospitals.
Private insurers also moved to lessen the scope of the ACA. Many ACA plans offer ones with high deductibles, which led to an increase in their popularity. Insurers framed this development as good for patients, who would possibly be paying less under this arrangement. Due to the high prices of healthcare, policyholders with high deductibles were frightened of meeting them, and “avoided any interactions with medicine at all” (236). Insurers have also tried to lower the scope of doctors and hospitals available in their networks, intentionally choosing professionals with less experience. This can be especially disastrous for families with children that go out of state for college. “Hyperlocal” networks force college students to spend excessive amounts of money on specialists out of network.
Finally, hospitals and doctors exploited loopholes in the law to save extra costs. The financial incentives to follow the ACA’s standards paled in comparison to the money they could make by employing unconventional billing strategies that toed the boundary of illegality. Many doctors intentionally capitalized on the leeway they had in defining qualifiers like “preventative,” “covered,” and “no cost.” While this may not seem like the best strategy, the ACA does not offer specific ways to interpret these terms. Therefore, patients have little room to contest perceived misapplications of these qualifiers. This led to patients getting charged on technicalities, like offering free colonoscopies but billing for any polyps removed. Though most colonoscopies involve polyp removal, doctors were able to argue that this was an additional procedure.
Chapters 10 and 11 give the reader a comprehensive explanation of the current state of the healthcare industry. Rosenthal does not rely as heavily on patient testimony here, choosing instead to present a straightforward description of recent events. These chapters give the reader a chance to digest the information presented up to this point and show them how each sector’s drive for profit builds on each other.
Chapter 10 demonstrates how different areas of the healthcare industry work together to operate in a business-oriented manner. Rosenthal uses the example of hemophilia treatments to show how sectors work in concert to achieve a desired outcome. We see the bloated research phase described in Chapter 8, the exploitation of ancillary services described in Chapter 6, and the overblown squabbles over generics depicted in Chapter 4. All of these came together to place the medication for a treatable disease out of reach. Rosenthal is therefore able to argue that medical subfields prioritize working with each other over working with patients.
Chapter 11 offers a fair analysis of the Affordable Care Act. The dire implications about the current state of public insurance are particularly evidenced in Rosenthal’s description of the slow sabotage of Medicare Part D. Rosenthal writes that drug manufacturers often price their medications to intentionally fall into Part D’s “donut hole” (233). Parts of the ACA attempted to prevent this with varying degrees of success, but many plans still give patients extreme financial burdens. This constant tug of war between the government and the private medical industry has concerning implications. The first is that the medical industry has grown so powerful that the government is unable to convincingly fight back. Consider the battle between the city of Pittsburgh and the UPMC depicted in Chapter 2. The next is that the government is choosing not to throw its full weight into regulating the medical industry. This is also possible, considering the influence of medical interest groups as described in Chapter 8. Either way, this chapter’s frank depiction of the current state of American medicine perfectly primes the reader for Rosenthal’s call to action in Part 2.
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