The Federal Government needs to step up to help eliminate Viral Hepatitis.

As a patient advocate, I often find myself taking a yearly trip (or a few) in the spring to speak with lawmakers and their offices. I speak to a number of injustices. I say this because they’re a strange combination of factors from willful defiance of the law to intentional underfunding likely due to in part to stigma and in part because it wasn’t “actionable” until 2013. Actionable, in this case, refers to investing in something that can improve or have a result which is desired. In truth, the only treatment prior to 2013 was still a crapshoot with a 70% cure rate (this rate does not include dropouts). Prior to 2013, there was little reason for an elected official to care about Hepatitis C (HCV), as little could be done. But in 2013, when a new treatment could help the millions suffering from Hepatitis C, instead, states restricted access to the treatments because they were expensive. (In truth if every American with HCV were treated for HCV with those prices, the numbers would run in the trillions, as it was about 88k per treatment and HCV affects between 3-6 million Americans. But due to the structure of healthcare here and the fact that more than 50% of people with HCV in the U.S. are unaware of their status, that could never have actually happened.) But when the prices fell, some states maintained the restrictions, some even expanded them. In 2015, CMS(Centers for Medicare and Medicaid Services) stepped in and issued a memo ensuring that all state Medicaid offices should not have restrictions for HCV meds. Despite both the significant decline in cost of the medications and the mandate of the 2015 CMS reiteration, 11 states continue to use liver damage restrictions, 34 states along with D.C. and P.R. continue to use sobriety restrictions, and 27 states along with D.C. and P.R. continue to use prescriber restrictions on access to Hepatitis C medications. In Texas, a Hepatitis C patient must be permanently injured with cirrhosis before they can access treatment. These restrictions are illegal, yet they persist. If you want to see a great breakdown of just how bad this is.

The State of Hep C with Medicaid Access (courtesy of StateOfHepC.org)

 Something as simple as an additional memo from the White House to CMS, giving them the ability to enforce the coverage and encourage Managed Care Organizations (Insurance organizations but for Medicare/Medicaid) to remove the restrictions might help ensure access to Hep C medications in states like Texas. An uncharacteristic hyper-regulated health access policy stance possibly due to strategic ignorance under the belief that it is more thrifty to deny live-saving medications to their residents. If you live in Texas, Montana, South Dakota, Missouri, Nebraska, Iowa, Indiana, Alabama, or West Virginia, have Hep C and are in need of assistance, please check out Help4Hep, give ’em a call they’re a great group with helpful resources. Otherwise, maybe find your representative and tell them how absurd this is?

 The other matter also involves a certain ignorance; however, this one does not have the willful defiance fueling needless death. Hepatitis C has been chronically underfunded for decades. It currently is funded at 39 million at the federal level. That’s about 12 cents per person for the entire United States. For a condition which affects between 3-6 million Americans, and an additional 1.2-2.2 million with Hepatitis B, it is painfully surprising how little funding has gone into helping patients with viral hepatitis. I recently learned in preparation for a meeting with a house rep, that we lack significant analysis of viral hepatitis as federally, there is only one part-time epidemiologist for all of California’s nearly 40 million residents regarding viral hepatitis.

Virtual Hill Days have temporarily replace typical Hill visits

Right now, NVHRHep B Foundation, Hep B UnitedNASTAD, and others are hoping to expand the budget for viral hepatitis. The CDC has estimated that it would require an annual commitment of at least 316 million dollars to put the United States on the path towards viral Hepatitis Elimination. The current suggestion is to increase the budget to 134 million, less than half of what the CDC estimated is necessary. While personally, it’s disappointing to imagine a world where people disagree with public health priorities, we have positioned ourselves for modest but strategic gains in funding in this decreased ask. Because at 134 million, that’s still less than 50 cents per person in the United States.

This funding would expand one of the most critical elements of Viral hepatitis elimination, screening. In 2020, the CDC finally expanded screening recommendations to all adults and rescreening people who use injection drugs and during each pregnancy. While the latter has been met with some resistance from OBGYN groups, the other recommendations are slowly being implemented across insurance networks. (this is why OBGYN groups are misguided in their approach) This new recommendation is meaningless without expanded testing, especially in communities disproportionately affected by Viral Hepatitis. That testing is naturally limited by the current meager national funding. State and local efforts have a hard time gathering support without grassroots groups due to the silent stigma of Viral Hepatitis. Enhancing funding for screening in Federally Qualified Medical Centers and other community clinics would expand the reach of Hep C diagnosis into the heart of the #MissingMillions and start to help people where they are. But screening is only the door; it’s important that folks and doctors are ready to help guide and link patients with hepatitis c to treatment and ultimately cure/elimination.

2016 I joined with CalHep to help expand linkage-to-care.

In 2016, CalHep, formerly a program for Project Inform, now a part of the San Francisco Aids Foundation, led an effort to have several targeted linkage to care programs for Hep C in California. In total, the program was successfully funded for three years, with two million going into primarily three linkage-to-care or physician-education programs. It was very successful, but ultimately it would not be extended in 2018 due in part to Gov. Brown’s stance on long-term funding. This program’s total cost was roughly 6 million dollars. This is a familiar figure to me, as my bill to insurance total sits at a bit over 6 million dollars for all of my care as a Hep C patient since diagnosis. Efforts like CalHep are scattered throughout the country and have been empowered by local campaigns like End Hep C S.F. and Hep Free NYC. These grassroots groups are the backbone of Viral Hepatitis elimination in the U.S., and are in place ready to be empowered by increased funding. Groups like Hep Free Hawaii, like End Hep C San Diego, work as private-public partnerships with stakeholder groups. Most elimination campaigns are paired with or work with local Harm Reduction groups. This is a natural fit, as there is no way to eliminate hep c without addressing its most common transmission route, intravenous drug use. Harm Reduction groups add to the grassroots power of Hep C elimination. As folks at End Hep S.F. have seen, when people are cured of HCV, they accomplish secondary goals and may have an easier time controlling their substance use; it is an incredible state change being free of viral hepatitis, an otherwise death sentence. Grassroots organizations aren’t just here in the United States, NoHep is worldwide; as a program from the World Health Organization and World Hepatitis Alliance, it serves to connect and share data with micro-elimination movements around the world. This is our time to come together and end viral hepatitis. We have the tools: Vaccines for Hep A and B, and Curative treatments for Hep C; we have the people willing to do the work, now we need support.) 

 You can help. This year, Congress is poised to pass healthcare legislation that can improve the lives of millions of Americans. Allocating $134 million for the CDC Division of Viral Hepatitis and $120 million for the CDC Infectious Diseases Consequences of the Opioid Epidemic Program in Fiscal Year 2022 appropriations budget would bring us one ACTIONABLE step closer to Hep C elimination. In 2016 the USA joined in the WHO NoHep Pledge for global elimination of Viral Hepatitis by 2030, but it’s fallen short so far and taken years to take simple steps like universal screening for Hep C, while Hep B still needs universal screening recommendations from the CDC. This funding step would be the first real investment made by the United States’ federal government towards Viral Hepatitis elimination in the U.S. Let’s end Viral Hepatitis.


Unconvinced? Check out what Frank Hood has to say, he’s the Manager of Hepatitis Advocacy for The AIDS Institute and an all around great guy.

Get Tested, Get Treated, Get Cured.

PS it wouldn’t hurt if we fully got rid of the federal ban on funding Syringe Service Providers, it would provide a helpful destigmatizing avenue for people seeking treatment.

The collapsing tunnel of healthcare premiums

It seems insane that something so necessary could increase in price so much over a short period of time, but Healthcare premiums have doubled in most states since 2013.

What’s worse is that for some states; Alabama, Alaska, and Oklahoma, it nearly tripled. The ACA’s three tiered structure was created to eat some of those cost increases and ensure that insurers had access to a larger market. The individual mandate helps keep prices from ballooning faster. And the premium credit gave those with low income, access to the market. The ACA was installed to slow the growth of premiums, and yet it outpaced inflation by more than 95%, this often leaves most consumers wondering…why?

There are a number of reasons for insurance premium increases, one has to do with the way companies responded to the ACA. Many retail employers began spreading out workers, opting for more employees, lowering the amount of workers available to receive full-time benefits, Ironically mostly in government-based hourly jobs. Companies began going for less Cadillac plans and focused on silver packages, which caused a sudden surge in middle package buying, increasing the prices overall. But company reactions were a drop in the bucket compared to the next two components.

An aging market

As boomers grow older, their health demands rise; and while hospital use is up, nursing and doctor shortages can create three to four month long wait times for appointments. Boomers’ reliance on pharmaceutical medication outpaces any other generation. Medicare spending in 2015 was $137.4 billion on prescription drugs in 2015, up from $121.5 billion in 2014. Medicare Part B spent $24.6 billion on prescription drugs in 2015, up from $21.5 billion in 2014. A whopping $7.03  billion was on Hep C meds alone which cured maybe ten thousand people, and with nearly 5 million Americans needing treatment it’s easier to see why premiums are rising. But it’s not just meds they need. Surgeries and outpatient services ranging from colonoscopies to knee replacement are up across the nation as our nation ages.

Pharma Bros:
rtx25hgy
Valeant Pharmaceutical
s’ Ativan increased by more than 1,264 percent, accounting for $5.3 million in Medicaid drug spending;

Turing Pharmaceutical‘s daraprim increased by 874 percent, accounting for $16 million in Medicaid spending; and

Hydroxycholoroquine sulfate increased by 489 percent.

Each of these increases doesn’t reflect need by the consumer, nor a need for research in development. The price increases are a measure of market control given to exclusivity of production. Investment firms purchase companies with the goal of milking them for investors as they shift focus to their new number one product: their stock. These kinds of moves produce volatility and increase the prices insurers need to set to control for.

As the individual mandate is now set to disappear in 2019,  it raises a serious question, will consumers be able to tolerate Premiums which cost more than their rent/mortgage payments?

Warehouse Doors and Bitter Pills

What brings us here, to these locked warehouse doors are the restrictions on access from insurers, and medicaid . High cost pharmaceuticals, and the changing of their discount policies. And the lack of effort by governors to approach discounts because of the pending TPP.

I’ve been talking a lot recently about these things and how we get to here.:

The Locked Warehouse Doors. 
Locked_warehouse_door
if you were denied Sovaldi, Harvoni, Viekira Pak, or any other new HCV med, if you had to go through lots of hurdles for treatment; I urge you to tweet/post about them with the hash tag: #LockedWarehouseDoor.

What Happened to My Support Path?
Sovaldi_bottle_My_support_Path
Gilead used to offer My Support Path to larger audience, but they’ve clamped down on the discount in hopes of allowing more patients access to their meds by pressuring insurance companies to loosen restrictions.

Medicaid’s Silenced Epidemic
Silenced
Medicaid’s inability to assist the needs of HCV patients in many states unless they have permanent liver damage and depreciating quality of life. These restrictions are in place even thought preventative treatment would cost half as much.

The Trans-Pacific Partnership
Trans Pacific Partnership
An agreement that could worsen the already steep drug prices we have, and limit the power of insurance companies/Government based Health Insurance like Medicaid to get discounts.

Medical Tourism as Bad Tourist Behavior
medical_tourism
And how Developed Countries are hurting themselves and LDCs(formerly third world) when patients mess with the supply of Live saving inelastic goods.